(Summer 2014) GlobeMed
Emma Broderick (’14, Chemical Engineering) Alicia T. Singham Goodwin (’14, Math and Women’s & Gender Studies) Kristen Finney (’16, Chemical Engineering)
Emma, Kristen and Alicia spent this summer empowering Community Health Workers (CHWs) and improving the quality of care by digitizing the collection and analysis of community health data at Association Espoir pour Demain (AED), an HIV clinic in northern Togo. To this end, they used CommCare, a mobile health application, to build an initial set of forms, train CHWs to use the CommCare application on donated smart phones, and observed the use of the forms in the field, revising as necessary. They also trained the CHW Director and other relevant staff members on how to build CommCare forms and analyze CommCare data.
Wrapping Up CommCare – August 18, 2014
Last Friday marked the end of the CommCare team’s stay in Kara, Togo. As you may already know (if you have been regularly following our monthly project updates), this summer, Alicia, Kristen, Maggie and I were very fortunate to have the opportunity to spend the summer working to implement CommCare, an open source, mobile and cloud-based platform, at AED-Lidaw, an HIV/AIDS clinic in northern Togo. The main goal of our work this summer was to create, streamline and introduce a set of CommCare forms to help guide the medical content of home visits conducted by Community Health Workers (CHWs) and incorporate CHW-gathered data into existing patient medical records. Thanks in part to the support, guidance and expertise of the staff members at AED, altogether over the course of the last 10 weeks, we were able to work as a team accomplish many of our project goals. Namely, we…
- Donated, tested and completely set-up fifteen Android phones for use with CommCare. Nine of these phones are currently being used by the CHWs in Kara to conduct their weekly home visits. The remainder of the phones were left at the clinic for use as replacement phones or for use by additional CHWs in the case that the CommCare program is expanded.
- Completed two CommCare manuals (written in both English and French). One manual is a CommCare HQ reference, describing how to build, edit and deploy new forms, manage users and export data on CommCare HQ site. The other is designed for use by the CHWs and describes how to use and troubleshoot the phones and the explains the use of the CommCare mobile application.
- Simplified and thoroughly revised the existing CommCare forms to eliminate redundant questions and improve data flow to enable regular review and analysis. The original forms were transcribed from existing paper forms, and thus were very bulky and often difficult to intuit and follow. Revisions to the forms were made based on feedback from Andrew (the Program Director), Marie (the CHW Director), the CHWs and AED patients.
- Completed five CommCare trainings for all of the nine CHWs based at AED in Kara. The trainings were held at the clinic every Monday morning and ran consecutively for five weeks throughout the month of July. The purpose of these trainings was to introduce the CHWs to using CommCare on the new Android phones, familiarize them with the new forms, ensure they were comfortable using the phones at their patient visits and confirm that they fully understood how to use the CommCare application and complete each of the forms. Additionally, the trainings provided us with an opportunity to assure the CHWs understood why AED had decided to introduce CommCare as a part of the CHW program, and explain to the CHWs how it could help make their jobs more effective.
- Worked with Marie, the CHW Director, and Christian, the Director of the Orphan and Vulnerable Children Program, to train them both in how to use CommCare HQ and help them gain mastery of the CommCare system. The goal of these trainings was to ensure that they were both comfortable and familiar with how to build, edit and deploy new forms, manage users and export data on CommCare HQ. We hope that together, the two of them will be able to modify and expand upon existing forms after we leave.
- Designed four personalized Excel Template files to help ensure that CommCare data is immediately accessible and useful to Marie (the Director of CHWs), Emmanuel (the clinic’s Head of Monitoring and Evaluation) and Clarisse (the clinic’s Midwife). The template files are designed to automatically format data exported from CommCare so that it is easy to understand and access key information. We left all four templates, as well as detailed instructions about how to export data from CommCareHQ and how to enter the exported data into the template file, at the clinic with Marie, Emmanuel, Clarisse and Alicia.
- Created a set of additional CommCare resources to assist clinic staff members in navigating CommCare and using the phones to effectively collect patient data. These resources include a weekly CommCare work flow and a CHW CommCare Resource Guide, which is comprised of a guide with details about when it is appropriate use each type of form, paper versions of each form (to be used to guide visits if a patient is not in the CommCare system or if a CHW’s phone is malfunctioning), information to help CHW’s walk their patients through completing a birth plan and instructions about how and when to upload CommCare data to CommCare HQ. We finalized, printed and left each of these materials at the clinic prior to our departure.
- Completed a baseline round of data collection to enable future monitoring and evaluation at GlobeMed at MIT and AED. We hope that our initial M&E work will set a precedent for future GlobeMed projects, and lay the foundation for more comprehensive monitoring and evaluation of the CommCare project as it progresses.
- Shadowed the CHWs on over 50 separate patient home visits (some visits with CommCare and some with out). Our observations from each of these visits were very useful in advising our form revision process and have been thoroughly documented for future reference.
One of the biggest challenges that we will have to face now that our work in Togo has come to an end, is the fact an effective and relevant CommCare platform is never really final or complete. There is always more work that can be done, more improvements that to can be made, new content to be added and new data to figure out how best to collect. At AED, the need for constant review and reconsideration is intensified, as the existing clinic data infrastructure is currently in a state of flux and likely to change over the next few years. It is our hope that Marie (the Director of the CHW Program), Christian (the Director of the Orphan and Vulnerable Children Program) and Alicia, who will be working at AED as a Fulbright Scholar for the next two years, will be able to continue on and pick-up the project where our work has left off. Though the initial transition may be a bit bumpy, we are all happy to answer questions, offer guidance and help out from afar, and ultimately, we are confident that CommCare will continue to be revised and expanded in our absence. Overall, we are excited about the progress we were able to make this summer, and optimistic about CommCare’s potential as a tool to increase data collection and improve the level of medical dialogue that regularly occurs between CHWs and their patients at AED-Lidaw.
Finally, we would like to say thank you to everyone at AED-Lidaw for their incredible patience, warmth and hospitality. It was an honor and a privilege to be able to work and learn from everyone at the clinic and we will certainly never forget our 10 weeks in Togo. Merci beaucoup et bonne travail! I hope sincerely that our paths will cross again in the future.
A Module in the Making: The Evolution of a CommCare Form – August 8, 2014
At last, the CommCare forms are complete! After what has truly been months of labor, involving many iterations and the work of over a dozen clinic staff members and MIT students, we have made the final touches on what we hope will be the fully functional CommCare application. This will be the version the Community Health Workers (CHWs) will be using for the next several months. To get a sense of how many rounds of revisions went into each form, let’s take a closer look at the form design process.
These forms trace their roots back to a set of paper documents composed by Marie, the CHW Director, in December of last year. Hoping to standardize data collection for each subset of patients, she created physical forms based on the patient’s category to be filled out at every home visit. Although the forms succeeded in guiding discussion and helping CHWs remember key messages, the amount of paper they required made printing cumbersome and data analysis impossible. Moreover, the forms were not customizable to the patient. They were even longer than necessary because they required that the same information be gathered every visit and because they included questions that were not always applicable.
For these reasons, the IAP CommCare team commenced the task of converting these forms into digital format. They created the first generation of each form that is in use today. CommCare’s ability to create display conditions—to display questions only if certain conditions are met—allowed the forms to adapt to the patient’s responses and thus shortened the form. However, since they were transcribed almost directly from their paper forerunners, they retained the vestiges of the old problems. They were longer and bulkier than desired, and they asked for repetitive information. Some amount of revision was necessary before the forms would be ready for the full CommCare rollout.
Andrew, the Hope Through Health Program Director, set to work determining how the forms could be adapted to better take advantage of CommCare features. In an effort to make the forms as concise as possible, he recommended cutting out or adding display conditions to questions that did not gather analyzable data. He provided shorter, cleaner versions of every question so as to reduce the amount of text on the screen. Recognizing that “fill in the blank” type questions would be useless in later analysis, he suggested changing most of these to multiple-choice questions. This process required input from many other staff members; for instance, in order to make a multiple-choice question that asked what symptoms a patient was experiencing, he had to consult the physician’s assistants and medical director to decide which symptoms were severe enough to merit reporting. One by one, we modified the forms to reflect Andrew’s edits.
After we incorporated these changes, each CommCare training session focused on teaching the CHWs to use a new type of CommCare form. Before each session, however, we reviewed the form in its entirety with Marie, the CHW Director. Since she works much more closely with the CHWs than we do, she was able to point out potential misunderstandings that we would not have been able to anticipate. For example, she suggested adding a question that would appear if a patient missed his last appointment asking why he was unable to attend. The answer to this question has important ramifications in how the clinic responds to patient absences, but the CommCare forms would not have been gathering this information had Marie not pointed out its significance.
Having endured many rounds of scrutiny and modification, the forms were slowlyintroduced to the CHWs. But the revision process did not end with Marie. Every week, we shadowed each CHW individually while he or she practiced using that week’s form. This enabled us to answer questions as they came up, but also to take note of the sources of common problems. We saw the value in this system during the very first week, when the forms were set up such that if the patient reported any symptoms, the form discontinued. The idea was that if the patient was suffering, it was insensitive to continue discussing matters of less urgent concern. But when we were out in the field, we saw that this was not always so straightforward. On our first visit, the patient reported feeling fatigue, so the form cut off abruptly. Both patient and CHW seemed surprised that the visit was over so soon. The patient was well enough for a longer visit—without CommCare, the CHW would have continued with the visit, and the patient probably would have been better off by sharing more information about her symptoms with the CHW. This was a serious error in the forms, but one we never would have discovered if we had stayed behind our desksat the clinic. Shadowing visits with the CHWs enabled us to see firsthand the limitations of the technology in the field, and to understand exactly how important it is to integrate the judgment of the CHWs into our work. After making this observation, we added a question asking if the patient seemed well enough to continue with the visit, to give the CHW the final say in whether the form continued or not.
We learned a great deal from these shadowing visits, but certainly did not become experts in the logistics of home visits. Recognizing this, we also began meeting with a focus group of three CHWs for an hour a week to go through that week’s form and solicit feedback. We were continually amazed at the ideas they came up with and the issues that we would not have foreseen on our own. For instance, we instructed the CHWs to leave questions blank if they didn’t know the answers. Our focus group pointed out, however, that while multiple choice or free response questions come up blank when skipped, date questions default to today’s date. This could result in errors when Marie analyzes the data later. To remedy this problem, we added a question that displays after a date question only if the answer submitted is today, and asks the CHW to specify whether they intended to answer with today’s date or if they simply did not know the answer.
As we continued to introduce forms, we often encountered issues such as the one described above, which were brought up with regard to a specific form but also applied to the forms introduced before it. Thus, the improvement process continuedthroughout the summer for all of the forms. After so many iterations, we are confident that the forms in their current state will serve as useful tools to the CHWs to help structure their visits and to collect important information for Marie in an analyzable format.
In the near future, the clinic is planning to expand their services to provide primary care to mothers and children. At that point, they will need to edit the forms and add new ones to meet this increased need, and the iterative process will begin again.
Community Voice: Marie Discusses CommCare – July 16, 2014
Last week I sat down with Marie Sahaletou Yelebo, the director of AED’s Community Health department, to discuss her thoughts on the CommCare project. In this video she talks about her work and how CommCare will facilitate it, as well as the improvements that she has already started seeing in the Community Health program since the introduction of CommCare.
Here is the video of the discussion: https://docs.google.com/file/d/0B17k1jsPv06sMUJQaHdxSXYwblU/edit?pli=1
Quick CommCare Update: Today we conducted the third of five training sessions for the Community Health Workers (CHWs) on how to use CommCare during their home visits. Over the past few weeks, we have been shadowing them in the field as they visit new patients, patients on antiretroviral treatment, and patients with babies under 18 months old. During the next two trainings we will train the CHWs on the forms for Orphans and Vulnerable Children (OVC) as well as hospitalized patients, and we will continue training Marie on how to manage and create forms in CommCare.
Du Courage!- July 10, 2014
My go-to fact for those awkward moments when you are forced to do a “fun fact about yourself” is that I’ve run on 5 continents and in 9 different countries, but I always add the caveat that Togo is hands down my favorite place to run.
Nearly every morning, Emma, Emily and I set off on our run by 5:50. As the town wakes up around us, we are greeted by the cock-a-doodle-doos of roosters and the shouts of “du courage” or “bon sport” of the people we pass by. We often receive some confused stares, as people wonder why we are running even though it is not Saturday, the day that everyone in the city of Kara goes running.
While that might seem like a bit of an exaggeration, I think that the other GROW members would agree that in actuality, it’s pretty accurate. On Saturday, dozens of people run to the Palais de Congrés. Banging on drums and decked in colorful soccer jerseys or pagne shirts, they descend upon the Palais de Congrés around 6:45 am, do some exercises with the Richard Simmons of Togo, and then return back to their starting point, approximately 5 miles away. The level of camaraderie is impressive. Throughout the run and exercises, they are constantly cheering each other on. If you start falling away from the pack or step to the side to take a break, you are immediately met with at least 10 shouts of “du courage!” and are quickly pushed back into the group to continue on.
Although I enjoy the excitement of the Saturday morning exercises, I appreciate the peacefulness of our weekday runs. While we have our set of go-to loops that we do, my favorite days are when we decide to go on an “adventure” and explore a new route. As you get farther from our neighborhood, Adabawere, the path starts becoming smaller and smaller, until there’s barely any path left at all. As the houses become farther apart and the cries of farm animals replace the sounds of motos bumping along the streets in the distance, you quickly feel that you have left the bustling city of Kara far behind and have suddenly dropped into the middle of rural Togo.
Each fork in the road takes you someplace new. You make a slight turn and you’re suddenly in a valley of cornfields with mountains overlooking in the distance, or you’ve found that river you’ve heard about but had no idea where it actually was. At points where you think you have hit a dead end and come to a stop, you come across a group of kids who laugh at you and your white-girl confusion of where to go next, but then kindly guide you through some high grass to where the path continues on. It’s often difficult to find the same path twice, or find your way back home for that matter. But when you by chance stumble upon that perfect loop (often literally, since the paths are filled with surprise rocks), you are impressed at your own navigation skills and feel proud that you’ve finally gained somewhat of a sense of the geography of the community you are living in (although really you just flipped a coin on what path to take and have no idea how that actually worked out…).
Despite the ten bugs that have flown into my eye and the two that I have swallowed, as well as the fact that no matter what direction you run it seems that you are going uphill and never really going back down, my runs in Togo have been one of the highlights of my trip. They’ve allowed me to see parts of the city I would never have explored otherwise and have enabled me to better understand the community AED and HTH work with. With slightly more than two weeks left in my trip, I am excited to have 15 more mornings to run, and 15 more chances to explore.
Continuing CommCare- June 23, 2014
By: Kristen Finney
After arriving in Togo last Thursday and spending the weekend getting acquainted with the clinic, this week we began working on our CommCare project at Association Éspoir Pour Demain (AED)! To begin, I would like to introduce myself. My name is Kristen and I am a rising junior at MIT. This summer, I am spending 10 weeks in the north of Togo working with my teammates Maggie (another rising junior at MIT), Emma (a 2014 MIT graduate), and Alicia (another 2014 MIT graduate) on the roll-out of CommCare, a mobile health platform designed to facilitate the collection and transfer of patient information. We are all members of a student group called GlobeMed, a national organization that partners university chapters with health focused organizations around the world. GlobeMed fundraises for our partner throughout the year, then sends a group of students to Togo over the summer and January term to implement projects.
GlobeMed at MIT’s partner is Hope Through Health, a US-based nonprofit that supports a system of HIV clinics centered in Kara, Togo. Together, the clinics are called Association Espoir pour Demain (AED), which in French means Society of Hope for Tomorrow. AED, currently the only provider of comprehensive HIV care in the northern part of Togo, delivers treatment for ~2,000 patients and provides the surrounding community with services such as the Orphan and Vulnerable Children Program, the Prevention of Mother to Child Transmission Program, and Psychosocial Counseling. AED relies in part on its Community Health Worker program to ensure every patient is receiving adequate care. Through this program, trained members of the local community act as medical liaisons—visiting patients in their homes to check-up on them, help them understand their condition and ensure that they know how to take care of themselves effectively.
One of the challenges that AED is currently faced with is how to efficiently access and evaluate the information Community Health Workers (CHWs) gather on home visits. A pregnant woman, for example, might be visited by her CHW every month throughout the duration of her pregnancy. By the time she gives birth, her CHW has created a detailed timeline of her condition and symptoms. But as it is now, very little of the information ever reaches the CHW Director and medical professionals at the clinic. Rather, all the information is handwritten by the CHWs in notebooks and submitted to the CHW Director at the end of each month for review. With over 200 patients receiving home visits, converting the information contained in notebooks into a useful form is nearly impossible and much of it is never referenced again. If this information were more accessible, it could be used to help facilitate patient follow-up and arrange additional care for patients with concerns.
Similarly, patients who have just started anti-retroviral (ARV) medications are visited by CHWs for the first several months of their treatment. At each visit, the CHW records the patient’s CD4 count and any other relevant medical observations or statistics in his or her notebook. In the early stages of ARV treatment, it is not uncommon for patients to experience significant side effects with a particular ARV regimen; often the drugs need to be adjusted before they work well for that particular patient. The amount of time that it takes to establish a treatment regimen that works for a particular demographic of patients could be calculated and improved if medical professionals were able to immediately examine the data collected by CHWs on their visits. But currently, given the lack of formal data collection and analysis, this sort of information is essentially inaccessible.
To help address these challenges, our goal this summer is to implement a mobile health system that will allow the clinic to:
1) Utilize aggregate data for monitoring and improvement purposes
2) Incorporate CHW-gathered data into patient medical records
Over the past six months, GlobeMed at MIT has been exploring CommCare, a mobile health platform that allows users to easily create complicated forms to be filled out via mobile phones. The administrator builds forms using the CommCare HQ website. At each home visit, the CHW submits the CommCare form that is applicable to that particular patient, and when the phone has 3G service or access to a wireless connection, it uploads the data to the server. Once the form is uploaded to the CommCa re server, clinic staff can download this data in the form of excel spreadsheets and use it to perform analysis. The forms are capable of complex logic; they can be written so that if you answer that the patient is up to date on vaccinations, for instance, it will not ask which vaccines she is missing. The forms can also utilize and reference data from previous form submissions. So, if a patient needs a CD4 test every 6 months, the form will only remind the patient of his next visit if it is within the next 2 months. Additionally, forms can also be designed to include pictures and videos for educational purposes.
The CommCare project was initiated here at AED last January, when a group of three students from GlobeMed at MIT traveled to Kara for four weeks during our January term. They were able to convert all twenty of the paper forms in use at the time into CommCare forms, and provide basic training for all the CHWs at the main clinic in Kara on how to use Android phones and the CommCare application. With limited time and only one phone, however, they were unable to launch the program to its full potential. Over this past semester we obtained a generous donation from Mozilla of 16 Android phones, which we will be setting up and leaving with the CHWs at the clinic. We have also worked as a team to complete two manuals, one for the CHW Director describing how to build forms on CommCare HQ, and one for the CHWs describing how to use the phones and the CommCare application. For the summer, we have three primary goals:
1) Streamline the forms to eliminate redundant questions and improve data flow to enable regular review and analysis (the forms were essentially transcribed from existing paper forms, and thus can be made more efficient in a digital version).
2) Train all CHWs to ensure they are comfortable using the Android phones at their patient visits and that they fully understand how to use the CommCare application and complete each of the forms. Additionally, we want to ensure the CHWs understand why we are using CommCare and how it can help make their jobs more effective.
3) Work with the CHW Director to help her gain mastery of the CommCare system so that she will be able to create new forms and modify existing forms after we leave. Our project will only be useful if the clinic staff have the ability to adapt the system to meet the clinic’s changing needs.
Introduction to CommCare – June 18, 2014
This week we began working on our CommCare project in Kara, Togo! As an introduction, my name is Kristen and I am a rising junior at MIT. My teammates are Maggie (another rising junior), Emma (2014 graduate), and Alicia (another 2014 graduate). We are all members of a student group called GlobeMed, a national organization that partners university chapters with health focused organizations around the world. GlobeMed fundraises for our partner throughout the year, then sends a group of students to Togo over the summer and January term to implement projects.
Our partner is Hope Through Health, a US-based nonprofit that supports a system of HIV clinics centered in Kara, Togo. Together, the clinics are called Association Espoir pour Demain (AED), which in French means Association of Hope for Tomorrow. The only provider of comprehensive HIV care in the northern part of Togo, AED relies in part on its Community Health Worker program. Through this program, trained members of the local community act as medical liaisons—visiting patients in their homes to help them understand their condition and take care of themselves effectively.
One challenge AED faces now is how to fully use the information Community Health Workers (CHWs) gather on home visits. A pregnant woman, for example, might be visited by her CHW every month throughout the duration of her pregnancy. By the time she gives birth, her CHW has created a detailed timeline of her condition and symptoms. But as it is now, all that information is handwritten in notebooks submitted to the CHW Director at the end of each month. With over 200 patients receiving home visits, converting this information into a useful form is nearly impossible. Similarly, patients who have just started anti-retroviral (ARV) medications are visited by CHWs for the first several months of their treatment. It is not uncommon for patients to experience significant side effects with a particular ARV regimen; often the drugs need to be adjusted before they work well for that particular patient. How long does it usually take for patients of a particular demographic to establish a treatment regimen that works? This information can certainly be determined by the data collected by CHWs, and if the clinic knew that statistic, it may be able to take steps to improve it. But currently, this sort of information is essentially inaccessible. Our goal is to implement a mobile health system that will allow the clinic to:
1) utilize aggregate data for monitoring and improvement purposes
2) incorporate CHW-gathered data into patient medical records
Over the past six months, GlobeMed has been exploring CommCare, a mobile health platform that allows users to easily create complicated forms to be filled out via mobile phones. The administrator builds forms using the CommCareHQ website. At each home visit, the CHW submits the CommCare form that is applicable to that particular patient, and when the phone can get service, it uploads the data to the server. Clinic staff can download this data in the form of excel spreadsheets and use it to perform complicated analysis. Forms are capable of complex logic; they can be written so that if you answer that the patient is up to date on vaccinations, for instance, it will not ask which vaccines she is missing. They can utilize data from previous form submissions—so if a patient needs a CD4 test every 6 months, the form will only remind the patient of his next visit if it is within the next 2 months. Forms can also include pictures and videos for educational purposes.
The CommCare project was initiated last January, when a group of three students traveled to Kara for four weeks during our January term. They were able to convert all twenty of the paper forms in use at the time into CommCare forms, and provide basic training to all CHWs. With limited time and only one phone, however, they were unable to launch the program to its full potential. Over this past semester we obtained donations from Mozilla for 16 Android phones, which we will be setting up and leaving at the clinic at the end of the summer. We also wrote a detailed manual describing how to build forms on CommCare HQ for the CHW Director. For the summer, we have three goals:
1) Streamline the forms to eliminate redundant questions and improve data flow. The forms were essentially transcribed from existing paper forms, and thus can be made more efficient in a digital version.
2) Train all CHWs to use the phones and to use CommCare. We want the CHWs to understand why we are using CommCare and how it can help make their jobs more effective.
3) Work with the CHW Director to help her gain mastery of the CommCare system. Our project will only be useful if the clinic staff have the ability to adapt the system to meet the clinic’s changing needs.
We can’t wait to get started! Check back here throughout the summer to see how we’re progressing!
Programming languages in Togo- Jan 31, 2014
It’s 3 o’clock on a lazy winter afternoon in Kara, Togo, which means it’s about 90 degrees outside and drier than a Jane Austen novel. I’m sitting with Alicia along with two representatives from the Togolese Ministry of Health who came up from the capital to meet us and discuss ideas for medical record systems—our own and also potential ones for the whole country. They’ve been working on a prototype that they brought with them to show us and get our feedback on.
The room is small: maybe three meters wide and seven long. There’s an old desk and a creaky fan and not a whole lot more. The setting afternoon sun shines through the curtains, covering the chipped walls and dusty floor in an orange glow that blends nicely with the clay-colored red that makes up much of the building. We hear roosters and goats in the background as we pause between explanations and back-and-forth translations.
The representatives from the Ministry of a Health are almost comically opposite: one is thin, young, and nerdy-looking, the other older, plump, and serious. They speak to each other in rapid but hushed French, whispering between questions and answers.
“So do most people have to learn Java first to understand it?”
Sadly that’s about a million times more French than I know how to say, so I just shake my head. Alicia explains that they’re different languages and the representatives nod thoughtfully.
Computers are sort of a funny thing in Togo. They’re both more common and less universal than you might think. They’re certainly not exotic or unattainable, but it’s not like the average Togolese family has everyday access to one. There is relatively accessible Internet access, but it’s expensive and somewhat awkward to use. It’s certainly not a common tool in the Togolese medical world. In fact, we learned that AED is the only ARV dispensary in Togo with wifi.
And yet, things are rapidly improving. GlobeMed brought a handful of older Dell laptops to AED six months ago, and brought some newer ones on this trip. We set up a server in the clinic. Data is quickly becoming digitized, normalized, and streamlined. Pretty soon, the clinic will be able to perform complex analyses on its data, which will result in real, tangible change to its operations and its patients’s experiences.
What’s really cool is that a lot of this can happen very soon. Togo obviously has a lot to go technologically before it reaches Europe or the United States, but with that reality comes a greater freedom to explore and to learn from past mistakes. For example, richer countries with more robust technical infrastructures are rapidly moving away from desktop applications to web-based systems (how many of our readers use Gmail?); while Togo’s network architecture isn’t quite there yet, I expect that in a few years it will have caught up. And unlike America, they can jump right to the newest technology. There’s no need to figure out transitions from old and obsolete technologies. Togo is ready for a lot of cool stuff, just as long as there were people able and willing to help make it happen in a responsible and sustainable way.
Near the end of our meeting, the representatives from the Ministry of Health asked what programming language I used most often. I told them that it was probably Python and they said they’d have to read up on it.
Here’s what’s really cool: The official implementation of Python is an open source project that anyone can download and anyone can contribute to. It’s also used extensively in the MIT computer science curriculum, almost all of which is available for free online. If these people do go back and read up on Python, they will be joining a huge community of people all around the world, which exists for pretty much no reason other than to learn how to build better tools. This community is self-reinforcing and open to everyone.
What this meeting made painfully obvious is that this is not an abstract idea. You can learn Python and help with a framework that real people will use: people who might be far away and facing really hard problems. We’re all in this together and you don’t need to fly to Togo to help out. Sign up for a class, hit OCW, open up a text editor and get cracking. You can help people in need from the comfort of your bedroom. Welcome to the new world order.
Spotlight on the Satellites- Jan 27, 2014
During our second-to-last week in Kara, we (Alicia & Yooni) travelled to each of AED’s four satellite locations to do day-long computer literacy training with the staff members. The satellites function differently from the main clinic in Kara, and each had their own quirks and uniqueness, so we figured we’d share what we learned and observed with all of you! Each satellite has a coordinator and a pharmacist, and one to three community health workers. Their main functions are to stock and run a pharmacy for AED members to fill their prescriptions, to organize and conduct CHW home visits for AED members, and to hold monthly support groups for expecting mothers as well as monthly all-member meetings for conversations about treatment adherence and general hygiene and nutrition. Unlike the main clinic in Kara, the satellites don’t do medical consultations, prescribe or distribute ARVs, or have counselling and testing services. Currently three of the four satellites have their own building, with the fourth (Kabou) renting out space in the local hospital. AED’s goal is for each of the satellites to be housed in a local hospital in an attempt to work more closely and collaboratively with the national health system, as well as to reduce stigma for members so that they can walk into the hospital like everyone else to get treated instead of walking in to the AED clinic, an easily distinguishable location just for HIV-positive people.
Our first trip was to Bafilo, a fairly large city located just south of Kara along the Route Nationale (the big highway that goes from Lomé up to Burkina Faso). The Bafilo satellite serves around 200 patients, making it the biggest of AED’s satellites, and the building is (unfortunately) sort of far out from the city center in a rural, residential area. During our trip, the staff explained to us that they struggle more than most regions with high levels of polygamy and belief in traditional healers, which increase the risk of spreading HIV and deter infected people from seeking treatment. The Bafilo satellite was started in 2005 by Jenny (while she was a peace corps volunteer) and Awali, the current coordinator of the satellite. Awali is a real jokester, and during our trip he kept making up ridiculous stories and explanations for things just to see if we would fall for them, such as the real reason why the Togolese don’t smile for pictures. The CHWs at Bafilo, although not originally intended to participate in our trainings, ended up really enjoying learning how to use computers and are excited to start reserving a block of time every Monday morning for typing practice so that they can continue to learn and improve.
The Kante clinic was much smaller, serving only around 80 patients. Although Kante felt like a small, sleepy village, it also seemed to be a common pit-stop for trucks making their way up from Lomé’s port to Burkina Faso along the Route Nationale. The space AED uses is currently rented from the hospital but it is far away from all of the other hospital buildings and unfortunately does not have electricity. This means that the clinic staff needs to bring their computer home each night to charge, and during the day they can only use the computer for around two hours at a time. Luckily there is a government building nearby, thebureau des affaires sociales which organizes support groups for victims of domestic violence and runs gender equality programs, where they often go to charge the laptop in the middle of the day. The coordinator’s name is Emmanuel (not the same as our M&E Emmanuel from the Kara clinic!) and the pharmacist’s name is Pauline. They work together with one community health worker and a peace corps volunteer nearing the end of his time in Togo named Alex. What really struck us in Kante was how much the four of them seemed like a big happy family, hanging out and eating meals together, and just generally collaborating on a very high level.
At about 20km away, the Ketao satellite is the closest to Kara. Sabine, the coordinator, just started working for AED around 9 months ago, and did a great job working through our computer literacy curriculum and helping Regine, the pharmacist with the difficult bits. They serve around 130 patients out of a building that is way out in the corn fields, also without electricity so Sabine has to bring the computer every day at lunch and in the evenings to charge. Since Ketao is a smaller city, there is no ARV dispensary in the city. Instead, patients visit the hospital for consultations and to get ARV prescriptions once a month Thursday morning, and then in the afternoon someone from the hospital compiles all of the prescriptions from that week and travels to a nearby town to pick up exactly that quantity of ARVs from a dispensary to come back and distribute in Ketao on Thursday evenings. This produces an interesting social phenomenon because, as a result, patients often also get prescriptions for non-ARV medication on Thursday mornings while they are at the hospital and then gather together at AED in the late morning or early afternoon to get those prescriptions filled before heading back to the hospital to pick up their ARVs.
Kabou is the most recently created satellite and is, for the moment, the only one actually housed inside of the local hospital, albeit in the tiniest room imaginable. Serving around 80 patients (wow! they’ve almost doubled in size since last time I was here in August!), Abiba, the coordinator who always has her adorable new daughter on her back, and Elizabeth, the pharmacist, work closely with the doctor at the Kabou hospital, who coincidentally used to be AED’s part-time medical director. Kabou is in the Bassar region, which is the main local supplier of yams, and each September there are huge yam festivals throughout the region to celebrate the harvest. Abiba has graciously invited us back next September to party with her and her family.
CommCare #3 – CHW Home Visits: Jan 8, 2014
Hi everyone! My name is Iris, and I am part of the CommCare team for GROW IAP 2014. It’s only been a week since we landed in Kara, Togo, but a lot has happened. As you guys have probably already guessed, the conditions are much different here. The Togolese people live a hot, “nature-filled”, and slow-paced lifestyle that has provided me with quite the cultural experience. However, I will leave my first impressions at that. Today, I will mainly be talking about our field work with the community health workers (CHWs) and how CommCare may restructure the current data flow.
The main AED clinic has ten CHWs and the four satellite clinics have six total, all of whom carry out home visits for patients on retro antivirals (ARVs), patients who have recently been hospitalized, and HIV positive soon-to-be mothers. CHWs are assigned an average of five HIV positive patients per day to visit at the patients’ homes, and they always check in at the main clinic every Monday and Friday. They remind patients to get CD4 count tests done every six months (a measure of the strength of their immune system) and pick up their ARV refills on time, as well as teach patients about a monthly health topic (ex. sanitation, child care, how to take ARVs properly). CHWs also report on the patient’s
, medical, psychological, and social situations. When the patient displays symptoms of illness, the CHW will make referrals to AED or the local clinic, and if the illness is serious enough they will accompany the patient to the nearest hospital. All the data collected by CHWs is essential to monitoring patient health and the efficacy of the program.
Unfortunately, data collection has been a major obstacle to further development. Marie, the Director of the CHW program, needs to know what happened in previous visits in order to schedule the weekly visits, ensure that follow-ups have occurred for high risk patients, and check that patients who were referred have actually gone to the clinic. In the past, CHWs wrote down scattered observations in their own journals that usually were not transferred to Marie. This system lacks a uniform data collection process and a central data collection center. Around two weeks ago, the clinic adopted paper forms for the CHWs to use on home visits. While this does provide a more uniform system, it still requires Marie to manually enter the data collected, not to mention costly printing and paper. Moreover, Marie’s records would only be updated at the beginning and end of each week.
We hope to solve these problems using CommCare, a mobile and cloud based platform for data collection and management. However, we needed to get a sense of the current workflow before we could come up with the best solution. So Guillaume, Sherry, Alicia, and I broke off into pairs and collectively shadowed three different CHWs. Alicia also had documentation from the GROW Summer 2013 home visits she shadowed. One thing we immediately noticed was that each CHW has his or her own style of conducting visits. Some would conduct the visit in the form of a casual conversation and fill out the paper form at the end, making the visit more comfortable for the patients but risking missing important information. Meanwhile, others would take out the paper form and go over each question in front of the patient to fill out, ensuring that almost all questions were addressed. We also noticed that the CHWs would treat patients in the city and patients living in more rural areas differently. Those in rural areas really don’t want the people around them knowing about their HIV status so visits were conducted in a more discreet manner.
Overall, the CHWs took their visits very seriously and made a good effort to connect with their patients. I really liked how the CHW Alicia and I shadowed kept asking detailed questions about the patient’s daily life to ensure that the patient could actually make it to the scheduled appointments at the clinic’s pharmacy. He also prompted the patient to ask questions about anything that was confusing. I liked the analogy our CHW used for the relationship between HIV, ARVs, and CD4 counts so that the patient would understand the importance of getting tested and taking the prescribed medication. He said something along the lines of the quote below:
“CD4’s are like soldiers protecting our body and HIV are the invaders that attacks these soldiers. The ARVs help put these invaders to sleep so that the soldiers can multiply and better defend health.”
However, the CHWs also made some mistakes during their visits. For one, many did not seem to completely understand what the form was asking, as information would be filled out in the wrong sections or just skipped over altogether. We also noticed that CHWs read the questions and wrote down the answers at a rather slow pace, taking up a lot of the patient’s time. Additionally, some would tell patients false information to comfort them, especially if they were a newly discovered HIV positive case. In fact, one CHW said that an HIV positive male could definitely have an HIV negative child with an HIV negative wife, but in reality there is a high chance that HIV will be transmitted to the wife during sexual intercourse. Alternatively, the man could pay around $4,000 to clean his swimmers but no one here has that kind of money.
By using CommCare, we hope to reorganize the forms so that every step is clear to the CHWs and confirm that all required information is entered at each visit. We plan to (1) use CommCare for submitting data that doesn’t require extensive writing and (2) design the process such that extensive writing on paper is only done when a CHW must describe a problem (psychosocial or medical issue). We also plan to adopt the method of filling out the form in front of and with the patient so that the patient won’t be offended when personal questions are asked and won’t feel that the CHW is just playing on his or her phone during the meeting. We have already given a presentation of our project to the CHWs this week and will start training the CHWs on CommCare this Friday! I’m so excited to see what the reception to this new technology will be! We really hope that CommCare will provide Marie with an efficient way to track data in real time and analyze the information collected to further develop the CHW program.
I hope you’ve enjoyed reading about our time in Togo so far! Please keep following our blogs!
CommCare #2- Les Premières Réunions: Jan 5, 2014
Hi everyone! My name is Guillaume and I am a junior at MIT majoring in computer science and biology and a part of GlobeMed at MIT. I am spending my IAP in Kara, Togo with five other MIT students (including Leonid, who also received funding from the PSC for his project) working in a small clinic that is a part of the Association Espoir pour Demain-Lidaw (known here as AED). I will be working along with two other GlobeMed members to implement a mobile interface that will hopefully ease the clinic’s data collection efforts and allow them to draw more meaningful and useful conclusions from data collected during patient visits.
The interface that we will be introducing to the clinic’s Community Health Worker Program is an application called CommCare. CommCare is a mobile and cloud-based platform developed by Dimagi that allows users to design their own forms and collect data using mobile phones. This mobile health app will allow Community Health Workers CHWs) to input data on their home visits with patients in real time onto Android devices. We’ve spent the last two months researching design methods for the application and preparing a training schedule and manual once we came to Togo. We planned on deploying CommCare with the intention of incorporating lots of feedback from the staff because we wanted this project to be as much of a collaboration as possible.
In the first dew days at the clinic, we scheduled meetings with Marie, Emmanuel, and the Community Health Workers to go over CommCare. Right off the bat I was struck by the different reactions that staff members at the clinic had when we introduced the project. Therefore want to focus my first post on the initial reactions and reactions the staff had to the project, along with what they are hoping to get out of it and how they think it will affect the clinic as a whole. The staff members that will be most affected by CommCare are the Community Health Workers (CHWs), Marie (CHW Program Director) and Emmanuel (Director of Monitoring and Evaluation). Our group met with each of these staff members to explain the project and its goals. During our presentations, our main focus was to get across the point that this project will be tailored to what the staff needs, meaning that we will be depending on a lot of their feedback to build the ideal product.
During our first morning at the clinic, we met with Marie. Marie originally worked closely with Andrew (our main liaison in Togo, HTH’s country director) to get the CommCare project rolling, so she was already familiar with the possibilities that this project holds for the clinic. Her main hope for the CommCare project is that it will eliminate the manual labor of inputting the CHW’s paper forms from home visits into the computer. During each visit, the CHWs are required to fill out a paper form that addresses some key questions related to that patient, including but not limited to: the date of their next appointment, when they are supposed to pick up a new bottle of pills, and if they have any health concerns. Right now, when this paper form is submitted to the clinic, it is Marie’s job to put the information into the system. This incredibly time consuming, especially since she is already overwhelmed with work. Explaining her enthusiasm for the project, Marie told us that something she is looking for in CommCare is the ability to upload information automatically – luckily one of CommCare’s main features! Meeting with Marie confirmed our belief that one of the main advantages of CommCare is that it cuts out the time and labor of manual data input of CHW forms into the computer.
Our second presentation was to the CHWs. The goal of our presentation was to explain that we really wanted the phone forms to make sense to them. We wanted forms to include the features that they wanted in order to make their lives easier in terms of sending data back to the clinic. There didn’t seem to be as much excitement in the CHW’s reaction compared to what we had seen with Marie. Some of the CHWs brought up concerns of showing up to a patient’s home with lots of technology; more technology generates more suspicion from the community, which could potentially expose patients that want to keep their HIV status hidden from their neighbors. It could also appear arrogant, bringing fancy new phones into some of the poorest neighborhoods of Kara. There were concerns about having to learn how to use the devices, especially after the CHWs had just switched to standardized paper forms from unstructured notebooks the previous week. What our group realized after meeting with the CHWs was that the majority of CommCare’s benefits will be during data management rather than during data collection. This means that the benefits to the clinic will not be as obvious to the CHWs, possibly deterring them from the project because it will require them to learn new technical skills that will not necessarily make their jobs any easier. We had encountered our first major obstacle: how to present the forms during training in a way that the benefits will be evident to the CHWs.
Photo of me and Ani, a Community Health Worker who has served with AED since 2006. With 8 other CHWs, she will learn how to use CommCare within two weeks.
Our third meeting was with Emmanuel, who is in charge of all the data analysis for the clinic that he collects from the different departments. Emmanuel is one of the most tech savvy people at the clinic and embraces learning about new data analysis tools that will allow him to draw more meaningful results from the information collected on the field. Again, we wanted to highlight how CommCare could provide an easier way to obtain consistent data from community health workers. Emmanuel’s questions were about compatibility with the new database being created for the clinic. He wanted our system to deliver easily transferable data with the central database. During our meeting he also walked us through the process a patient goes through from the time they decide that they want to start ARV treatment to the time they actually start receiving the ARV medications. Emmanuel said that one goal of CommCare should be to reduce this period as much as possible on the AED side because the government is already slow with its side of the paperwork. His concern was very similar to Marie’s; Emmanuel does not have access to the information collected from CHWs until their forms are in the system, which currently does not happen until they are inputted in by Marie. Using CommCare, we make Marie’s job easier and more effective, in turn relaying information to Emmanuel faster and in a more standardized format. Hopefully, CommCare will allow Emmanuel to compile the data he needs for the government along with any additional data that can increase the clinic’s productivity and patient capacity.
Meeting with the staff members of the clinic that will be most involved with the CommCare application gave us a lot of insight as to how we should proceed with the training of CHWs and how the application can be used in the field with patients. Emmanuel and Marie clearly understood the potential of the project and how it will be of use for the clinic and the data analysis needs of different departments. What Sherry, Iris and I realized, however, was that this potential was not so obvious to the CHWs. It is true that the CommCare application does not bring as many short term benefits to the CHWs; they need to learn how to use a new device, how to fill in a new type of form, all while not overwhelming their patients with technology. So, as a team, we have decided that the best approach to our trainings next week will be to demonstrate how CommCare will let CHWs focus on interacting with their patients instead of having to deal with paperwork.
Me, next to the phones on which CommCare will be deployed. Each Community Health Worker will have one phone that will be using during their visits to record information from their patients.
Aside from the work, it’s been great getting to explore Togo! Here are some of the things that I’ve done so far: seen a lot of the Togolese countryside during an 8 hour bus trip up from the Lome airport to Kara, bargained with motorcycle taxi drivers (called zeds), eaten many different types of meals (bouille, or porridge, for breakfast, cous-cous with cheese kurds for lunch and fou-fou, sticky mashed yams, for dinner), and seen a chicken completely prepared for a festive New Year’s Day dinner dish. I have learned that all exercise should be done at five-thirty in the morning to avoid the sun’s intensity and that mosquito nets definitely make a difference even for afternoon naps. Togo is unlike any place I have ever visited and its citizens are some of the friendliest people I have met. Everyone greets you with a smile on their face, especially when you attempt to greet them in Kabiyé, the local dialect. I am excited to keep experiencing new things and especially to start training the CHWs and get CommCare on the field!
CommCare #1 – Commençons!- Jan 4, 2014
Guillaume, Iris, and I (CommCare Team) have finally arrived in Kara after 48 hours of travel and we’ve been working at the clinic for the past 5 days. I’d like to briefly introduce the project and the clinic staff members with whom we collaborate the most.
We’re here at AED to assist with the introduction of CommCare into the clinic’s Community Health Worker Program. CommCare is a mobile and cloud-based platform developed by Dimagi that allows users to design their own forms and collect data using mobile phones. (For those who want the technical details, there will be a separate tech post coming soon).
Who would use CommCare? One example might be a team of researchers who need to survey a village on child-care practices for a study, or perhaps a group of agriculturalists that want to measure and understand crop-yield over time. In our case, we are using CommCare to provide case management and data-collection support for AED’s 16 Agents de Santé Communautaire, also known as Community Health Workers (CHWs). CHWs extend the clinic’s impact into the field, meeting with patients one-on-one in their homes to collect information on their health status in between doctors’ visits and encourage health behaviors at home. CommCare’s forms are simply composed of basic form elements like checkboxes, text fields, multimedia, etc. In short, the CHWs will document important data on mobile phones, which will automatically send the data to the server over a wifi or 3G connection. Having easy access to the server’s information on CommCare’s website will allow the CHW director to almost immediately observe the patient population as a whole, monitor CHW activities at a distance, see which patients were referred to AED or a local hospital for urgent care, and prioritize higher risk cases based on the information reported by CHWs.
We will primarily work closely with Marie, the CHW Program Director. Marie is a 26-year old Kara native who grew up in a local orphanage named S.O.S. Village d’Enfants. At our first meeting I was struck by her calm, deliberate manner and English proficiency, which she said she practiced by watching films in English. Her work at the clinic involves scheduling home visits and prioritizing patients at higher risk, such as pregnant mothers, patients just starting on ARV treatment, children under the age of 18, and patients who have recently been hospitalized. However, her job is difficult without the proper tools to assist with case management (scheduling and clinic referrals) and analyze feedback to inform improvement.
Previously, the framework for home visit documentation did not exist. CHWs could only jot down notes unsystematically in a small notebook, which was often difficult to find, let alone analyze. Furthermore, information learned about a patient at the clinic was not merged with information learned from visiting the patient at home. Now that AED owns laptops and Office software (as of last year), the program director can receive and analyze data at the clinic. However, inefficiencies in data collection and case management still exist when visiting patients at home and sharing the data collected with Marie. A recent step forward has been the adoption of structured paper forms, but those still require manual entry into a computer. This is part of the problem AED will try to overcome using CommCare.
Other valuable resources to us include working with Andrew, the HTH Program Director, and Christophe, the AED Executive Director. Working next door to us, they are always ready to help us coordinate meetings and presentations and answer questions about the long-term goals of the CHW program, since our work not only involves CommCare but helping to redefine the program’s workflow as a whole. We are also coordinating with Emmanuel, the Director of Monitoring and Evaluation, to ensure that we satisfy his needs as manager of data for the entire clinic.
Happy New Year from Togo!
Happy New Years from Alicia, Guillaume, Iris, Leonid and Sherry in Kara! This morning we got to drink delicious lemongrass tea and eat pancakes with Andrew’s own homemade vanilla syrup, Sherry and Guillaume learned popular Togolese dances from Tanira’s younger sister, Anisha. Alicia helped deplume and eviscerate two chickens for a big fancy dinner tonight. Here are some pictures of us with Tanira’s family, we hope you all have a happy and healthy new year!
AED’s End of Year Conference: December 29, 2013
Last weekend AED hosted its first ever conference, which summarized the work done in 2013 and provided a forum for discussion on how to improve the quality of AED’s care. Over 50 people were in attendance (pretty impressive for 8am on a Saturday morning!!), including AED’s entire staff, the president and other members of the board, administrators and doctors from local hospitals and other NGOs, a university professor, and interested patients of AED. The conference was organized by Spero, AED’s new medical director, who hopes one day to establish AED as a well-known model for high-quality and well-run HIV care on a national or even global level. The conference ran all day and was comprised of a mix of presentations from individual departments and two panel discussions on broader topics: improving the medical content of visits and evaluating community-based approaches to care. Here’s a picture of one slice of the audience (everyone got all dressed up for the occasion), with distinguished guests coming from other institutions sitting in the front row.
Spero gave the first presentation, explaining retention rates and treatment adherence using the analogy of water flowing through leaky pipe – AED tries its best to capture a large volume of patients, but there are steps along their path to health where some of the patients are lost. For example, a couple patients “leak out” every time their pastor encourages them to stop taking their HIV medication or when they don’t have the means to get to the clinic pharmacy once a month. One goal for the new year is to better identify and plug up those leaks so that every patient who starts their treatment with AED continues to benefit fully from AED’s services.
One topic that came up in many presentations was the need for more counseling and mental health infrastructure for AED’s patients. Especially important with a chronic illness like HIV, a healthy mental state can encourage a healthier lifestyle and better treatment adherence.
The medical team raised a concern about how well AED is monitoring their pre-ARV patients. ARVs, or anti-retrovirals, are drug cocktails that HIV-positive people can take to drastically improve their health and prolong their lives. In Togo, ARVs are distributed free of charge, but due to a national shortage, are only given to registered patients below a certain threshold of health (CD4 count under 350 for those of you interested in medicine). AED assumes the role of being both an ARV-prescriber and an ARV-dispensary, meaning that the clinic keeps strict records and follows a set of nationally-mandated protocols in exchange for the privilege of providing ARVs to their eligible patients in-house. It is relatively easy to monitor the patients on ARV treatment; each new medical consultation and test result is recorded in a standardized, government-issued blue notebook, and whether patients come to the dispensary on time to pick up a new month-long supply of ARV medication is a pretty good indicator of whether or not they are taking their medicine correctly (it also ensures that they visit the clinic and get a check-up once a month). However, for the patients who are not yet on ARV treatment, their medical records are much less standardized and they come into the clinic much less often (once every three months, and sometimes more if they are in poor health). It is harder for the medical staff to monitor how well they are managing their own health and dealing with opportunistic infections (infections that would normally be no big deal, but take advantage of the weakened immune systems of people living with HIV and can be very dangerous), and it is difficult to distinguish between patients who stay away because they are healthy and patients who stay away because they are avoiding treatment. The non-standardized forms make it more difficult to keep track of these patients, and it’s harder for the clinic to notice when they should reach out to see how they’re doing. Hopefully, with the help of the new database we are building, in 2014 AED will make progress towards improved monitoring of pre-ARV patients.
In addition to hearing statistics that summarized the year from various departments (highlights: 44 babies were born and all tested HIV-negative at 18 months, less than 1% lost-to-follow-up of ARV patients, new preventative campaigns were deployed in churches and hotels), there were two interesting conversations that evolved out of the panels. The first was about patient experiences and communication with local hospitals, and the second was about finances and the monthly dues (recently decreased from 500CFA or $1 per month to 300CFA or $0.60 per month) that AED members owe.
One of the representatives from a local hospital brought forward a complaint that sparked a fiery debate between him, Christophe (AED’s executive director), and the president about AED’s responsibilities to the hospital and in turn the responsibilities that the hospital has to AED’s patients. AED does not have a full medical facility, so when patients are very sick and need special tests or to stay overnight, AED refers them to the hospital where they are cared for. AED pays the bill, and if the patient doesn’t have a family member to help out, AED also sends a community health worker with the patient; hospitals in Togo don’t provide things like food or sheets so every patient needs a caretaker with them to do laundry and bring their meals. If doctors at the hospital prescribe medicine, the CHWs can go to AED’s pharmacy to check if they have the right products and bring them back to the patient. The hospital representative was angry that AED doesn’t always have a CHW to send and can’t always fill prescriptions, but unfortunately AED doesn’t always have enough resources to meet all of the demands of hospitalization for their patients. Christophe responded angrily that the hospital has begun expecting AED to provide things like blood for transfusions instead of just expecting AED to pay for them, and that it should be the hospital’s job to be prepared for their patients’ medical needs in the same way that they would for any individually paying patient. The third point raised in the argument was that often when patients go to the hospital they are treated differently than everyone else because they are from AED. The president, along with some other AED members, recounted stories of discrimination and unfair treatment at the hands of the hospital staff. The most common example was that hospital staff would use extra, unnecessary safety procedures around AED patients such as using gloves when taking a patient’s temperature, for fear of HIV transmission. This type of stigmatization coming from the medical community makes patients’ experiences getting care unpleasant and humiliating, and helps reinforce the notion that people living with HIV are dirty and dangerous to the population as a whole. There was no real conclusion to the conversation about hospitalization, but it is clear that AED will need to work closely with local hospitals in the future to set up more standardized procedures and stricter agreements about the expectations on both ends.
After the presentation on AED’s earnings and expenditures from the year, some attendees worried that AED doesn’t make very much money from their member collection each month compared to their operating costs (a difference that is made up by HTH funding and grant money from other sources). Some complained about members who don’t pay their dues, and many wondered aloud whether this phenomenon was due to poverty (their inability to pay) or a “manque de volonté” or a lack of goodwill. The conversation became heated when the president stood up to remind everyone that all AED staff members, even those that are not HIV-positive, are members of AED “in solidarity” and should be paying their dues every month along with the patients. Some members lamented their ties to large NGOs and donors because it means that they don’t have complete control over how they spend money. In any case, there is no escaping the reality that charging patients enough to cover the operating costs of AED would make care prohibitively expensive, especially since AED’s serves an especially poor and disadvantaged patient population.
Later in the day, I was even asked to sit on the community health panel as one of the “experts” to present my work from last summer shadowing AED’s community health workers (you can read more about that project here)! It was pretty exciting but I was also nervous to present (in French no less) to a group of people with so much experience and wisdom when it comes to HIV care. Below you can see a picture of the white board diagram I drew during my presentation, spelling mistakes and all. The basic summary of my presentation was that, based on my experience shadowing 6 community health workers on approximately 30 home visits, AED is succeeding right now in using their CHWs as “arms,” extending the reach of the clinic out into the community, but could benefit from reconceiving the CHW program as a bridge between the clinic and patients, bringing medical care out to the patients and also allowing for information flow back into the clinic. For those of you who can’t read French, the purple describes what I noticed the CHWs doing well: explaining their disease and treatment in an accessible way, encouraging patients to advocate for their own health, promoting treatment adherence, and filling prescriptions for bed-ridden or hospitalized patients. Currently, the only information coming back into the clinics is in the form of non-standardized notebooks that very few people at the clinic look at other than the CHWs. I’m excited to see how our mobile health app project this winter (look out for a blog post about it soon!) can facilitate information flow back to the clinic to be used by the medical staff to get a more complete picture of their patients’ health as a whole.
At the end of the conference we all ate snacks together (oranges, bananas, peanuts, and palm wine) and people who were interested stayed in the room to hang out and chat about all the information that had been presented. Despite some bumps in the road (we had a power outage all day long, meaning that no one could use the projector to display the slides made for their presentations), the conference did a great job of grounding AED as a site of research, learning, and innovation as well as being a fantastically successful health care provider. The conference also emphasized that AED was looking for constructive criticism and open to new ideas, and is always trying to improve their quality of care.
Second post – Saturday, December 21, 2013: Database design
As I mentioned in my last post, my main project here in Kara is to work on a database for AED. The database would let the clinic keep better track of its patients and operations, and would enable it to more easily produce reports, observe trends, and generally deliver better care more efficiently.
We basically just got here so there isn’t a whole lot done yet, but we’ve had a lot of conversations about some constraints. Those constraints have led to some pretty interesting designs, some of which start treading into “systems research” territory. This post is the story of why a tiny clinic in rural Africa has such complex data needs.
Lay of the land
Normally when deciding how to design a database, there are just a few factors you need to take into account. Some of the most important are size and number of users. AED has over a thousand patients and several dozen staff members, so we could classify it as “moderately-sized”: it probably needs something a little more powerful than what a mom and pop shop could get away with, but it’s not going to need anything too fancy or crazy either.
These days in America, such an organization would almost certainly hire a contractor to develop a database that’s hosted “in the cloud” (with the added complication that since the database is hosting medical data it has to adhere to all sorts of medical privacy regulations). But for AED, that simply wouldn’t work. The clinic’s Internet connection is serviced by a 1 Mbit/second ADSL line (roughly what an American household would have had in 2007) with wireless spread throughout the clinic by two routers you could pick up at Best Buy for $30 each. With dozens of staff members trying to access the Internet at once, the database would become pretty much unusable.
So the database has to be kept on a dedicated computer called a “server” physically located inside the clinic. All the computer in the clinic connect to that server through what is called a “local network” without needing to go through the Internet. But that presents its own set of challenges. As it turns out, not only is the network equipment in the clinic outdated, the power is also not the most reliable. Brief power outages of a minute or two are not uncommon, and longer ones lasting over an hour are not unheard of (in fact, the power went out for almost the whole day today!). If the database is hosted on the network, we need a plan for that. The server hosting the database, as well as the routers connecting the network, all need backup power supplies. It’s probably also a good idea to have backup servers hosting copies of the database located throughout the buildings, so that if one goes down, the others could hopefully take its place (you could even take advantage of the fact that the power often goes down in just one part of the building and put them in different rooms).
A slippery slope
And this is where things start to get tricky. Once you go from a standard run-of-the-mill database to a replicated system, you immediately run into a whole host of problems. As a simple example, imagine if we had two servers running a copy of the database: a master and a backup. Every staff member’s computer is configured to switch to the backup if it can’t reach the master. Now imagine if power goes out in one part of the building, separating the network into two halves that can’t talk to one another but can still talk among themselves. We get unlucky and the master server is in one half and the backup is in the other. What happens?
Well, those computers that are in the same half as the master keep on churning as if nothing happened. But those that are in the other half can’t reach the master, so they switch to the backup, which they can reach. So now, whenever a change is made to the database from a staff computer in the first half, it only gets put on the master database and not the backup. Whenever it’s from the second half, it only gets put on the backup and not the master. As time goes on, the two copies grow further and further apart, making them harder and harder to bring back into sync once the network is up again.
If we think about what’s really going on here, the problem is that we’re treating “not being able to talk to the master” and “the master is down” as the same thing. But they’re not. So if a computer decides to talk to the backup because it thinks the master is down, it’s important that all the other computers agree. Otherwise we can get inconsistencies.
The easiest way to avoid this is to have each computer go through some sort of “arbitrator” computer that decides whether the master is really down, rather than letting each computer decide individually by trying to reach the server. The arbitrator tells the computer whether it should talk to the master or backup. If a computer can’t reach the master computer that the arbitrator directs it to (or can’t reach the arbitrator itself), it does nothing. So some computers might not be doing any talking at all, but those that do are guaranteed to be talking to the same server.
This is great, but it comes at the cost of data availability. For example, if the arbitrator is directing everyone to the master server but a particular user can only reach the backup server, that user won’t be able to do anything, including just looking at data, which doesn’t cause any inconsistencies. That’s a pretty high cost to pay, especially when so much of the database access is read-only (e.g. looking up a patient’s medical history). Of course, there are compromises—for example, maybe you only have to go through the arbitrator if you’re going to write data but you can do what you want if you’re going to read it. This, in fact, is close to what most people do, and probably what we’re going to go with too.
Database administration is a really pessimistic lifestyle: everything works beautifully when there are no problems, so pretty much all your time is spent preparing against disaster. On the other hand, it can be extremely rewarding to get right—and even fun at times if you’re nerdy enough! As we all get more into the project and start to have a better idea of what seems to be working, as well as discover some pitfalls we haven’t thought of yet, we’re almost certainly going to need to revise our plans. I’ll post more updates about the project as it progresses. In the meantime, here’s a picture of an adorable goat, followed by an even more adorable selfie of me with Rehana, Andrew’s (our host’s) five-year old daughter.
First post – Saturday, December 21, 2013: Introduction
Hi everyone! My name is Leonid Grinberg and I’m one of the PSC fellows this winter. As my bio states, I’m a senior studying computer science at MIT, and I am spending the next six weeks in Kara, Togo in West Africa. I’m here as part of a team from MIT’s chapter of GlobeMed, a national organization that brings together college students and non-profits that focus on global health issues. GlobeMed at MIT partners with an American NGO called Hope Through Health (HTH), which in turn has a long-term partnership with a Togolese HIV/AIDS clinic called Association Espoir pour Demain-Lidaw (AED-Lidaw or just AED). I’m living with Andrew, HTH’s Program Director who lives in Togo and works at the clinic full-time. There are six of us in total from GlobeMed, four of whom will be arriving in about a week (including Guillaume, also funded by the PSC). We’ll all be here working on a number of projects through the end of January.
My primary project is to help build a database for the clinic to manage all of its data. You might be wondering whether a small Togolese clinic would even have that much data, but you would be surprised. Even a few hundred patients is a lot to keep track of when you consider just a few of the basic things that need to be recorded, such as prescriptions, tests, drug stock supply, and visits. AED has over a thousand patients, and streams of data come in from a variety of sources: things Community Health Workers (CHWs) write down on paper when in the field, proprietary databases that are maintained by the government, and data entered into spreadsheets by staff members.
And keeping track of all of this data matters. Having well-maintained data is crucial not only for delivering quality care (for example, doctors need to know how a patient has been reacting to medicine over time), but also for generating reports to funders, as well as for responding to larger trends that can be difficult to notice otherwise. For example, if all of the patients from the same region are infected with tuberculosis, chances are that the clinic is not spending enough time spreading prevention techniques in that area. By having ready access to all of its data, a clinic can more effectively manage its resources and provide care where it’s needed most.
Unsurprisingly, health data is a huge, multibillion dollar industry, with entire companies devoted to producing software solutions for clinics and hospitals to manage their data. Unfortunately, the vast majority of these solutions are too expensive for a clinic like AED. Additionally, AED has some unique technical constraints, which make directly deploying off-the-shelf solutions more difficult. My job will be to understand these technical constraints and to propose and implement a solution that fits within them while meeting as many of the clinic’s needs as possible.
Most important of all, the solution needs to be something that the clinic and its staff—and not just I—think is useful. From a practical standpoint, this makes sense whenever you’re developing software for anyone, but it’s especially important to keep in mind in the health NGO world, where all-too-often we see well-meaning foreigners come in to propose expensive solutions and projects to problems they don’t fully understand.
I’ll be writing about my thoughts and progress as I get started over the next few weeks. This is going to be an extremely daunting, humbling, and (hopefully!) rewarding experience and I can’t wait to get started!
IAP 2014: Leonid and Guillaume will travel to Kara, Togo to continue the work the GlobeMed!
Leonid Grinberg (’14, Computer Science) will spend winter break and IAP in Kara, Togo, Western Africa. He will be working at Association Espoir pour Demain-Lidaw (AED-Lidaw), a clinic that provides medical services for individuals and families living with HIV and AIDS. He plans to collaborate with some of the workers at the clinic to develop a robust database for storing medical records to replace an antiquated paper and spreadsheet-based system.
Guillaume Kugener (’15, Computer Science and Molecular Biology) will spend IAP in Kara, Togo. He will be implementing a mobile interface for community health workers to use when interacting with their patients. The mobile forms will be built using Dimaji’s CommCare form builder prior to IAP. These forms will be brought to a clinic in Kara and Guillaume will help train the community health workers to use the forms. The goal is to continue the clinic’s transition from paper patient records to electronic patient records.
The Big Gay Party
On our last Saturday in Kara, AED co-hosted a “Big Gay Party” (as everyone here keeps referring to it) in conjunction with an HIV-prevention NGO, Espoir Vie Togo, which is based in Lomé. In preparation for the party, the members of AED’s MSM (Men who have Sex with Men) program came together for a meeting at the clinic on Thursday night, and we were lucky enough to have the opportunity to sit in and listen. There were 25 members in attendance, all of whom seemed to be around our age or a little bit older, and most of whom introduced themselves as students. Among the group there were about 5 Peer Educators, members of the group who also help to plan and facilitate events, inform their peers on the importance of safer sex and getting tested, and occasionally do home visits. The group comes together at AED for meetings once every 3 months, and they are occasionally invited to the clinic for other activities such as information sessions on the different types of STIs and how they are transmitted. Also in attendance were representatives from Espoir Vie Togo, the MSM group’s fabulously flamboyant and gregarious leader, Yannik, as well as Christophe and Spero (AED’s executive director and new medical director respectively) who helped lead the meeting and answer questions.
First, Christophe went over why they were throwing the party and what participants could expect there. The party is intended to be a fun, safe space for members of the community to hang out and get to know each other, and also receive vital health services such as STI and HIV screenings. One thing that struck me while Christophe was speaking was how he only used first person plural – we, us, our – when talking about the night. We are throwing this party for our community. It should be a safe space for us to be open and to really be ourselves, and to support each other. Even though Christophe is the director of all of AED, and manages many different programs and events, it was clear that he really cared about making the evening and the group a success, and in return it was clear that the men in the room really trusted and respected him. Christophe explained that there were fun activities planned for the evening, including snacks, a dance competition, and a fashion show (how exciting!), but that there would also be the opportunity for anyone who was interested to do STI and/or HIV screening. There were a couple of key points that Christophe stressed over and over again throughout the meeting:
- Getting tested at the party is completely optional. No one should feel pressured to get tested and no one should put pressure on their friends.
- Everything at the party will be completely free and completely confidential. No one is keeping a list of who attended or who got tested, and no one’s test results will be made public or told to anyone but them.
- Being supportive of the other members of the community is extremely important, as this is one of the only venues to be out and open, as well as talk honestly about HIV.
The meeting attendees were given an opportunity to ask questions, and some of the most interesting ones were:
“How accurate are the rapid HIV tests? Are they as good as the ones done at the hospital?”
Answer: The tests are exactly the same as the ones done at local hospitals, and are very accurate. Tests will never produce false negatives, but may show up inconclusive or with false positives, so upon either of those types of results, patients are referred to the hospital to do a blood test.
“Why does the STI screening have to involve a (potentially embarrassing) physical exam? Why can’t it just be a rapid blood test like the HIV screening?”
Answer: We are looking for multiple different STIs during the screening, which all manifest themselves differently, most visually and some even before the results would show up on a blood test. We can learn more and obtain a better sense of what to be concerned about by talking with you about your sexual history and doing the visual exams.
“How will you ensure that the results of the screening will remain anonymous if we’re all going to be there at the party together, and it will be obvious that someone tested positive if their mood changes drastically before and after the screening?”
Answer: While there is no guarantee that your friends won’t be able to pick up on any mood change that may result from a positive test result at the party, we have trained counselors who will be there to talk you through the process, both before and after hearing your test results. They will hopefully provide you with enough information and resources to leave feeling comfortable and empowered to take control of your own health and live a full and happy life regardless of your status. If this is a major concern and you don’t want to get tested at the party because of it, you are welcome to come in to AED any time for a free, confidential screening.
At the end of the meeting, Christophe asked for volunteers to demonstrate proper condom usage, and everyone who participated got all of the steps correct.
Overall, the meeting felt just like a safer sex class or demo in the US, complete with awkward silences, nervous laughter, genuine concern, and lots of snickering and funny innuendos from the audience during the condom demonstrations.
The party was a huge success! 89 men showed up to the party, and there was learning, mingling, and dancing late into the night. At first Laura and I felt pretty out of place as the only women and the only white people in attendance, but everyone went out of their way to talk to us and make us feel welcome. We especially enjoyed watching the competitions with prizes (more condoms and lube), which included safer sex trivia – just like the Sex Jeopardy event run by the Sexpert at MIT! – and some incredibly intense rounds of musical chairs, a game enjoyed by people of all ages in Togo. Here are some numbers to give you a sense of what the night accomplished and how the program has grown since their first event (this is only the second one ever to happen in Kara):
First Party Second Party
# of attendees 75 89
# of HIV screenings preformed 51 69
# of positive or inconclusive results 1 2
# of STI screenings performed 9 34
# of positive STI results 1 4
The MSM group affiliated with AED is the only LGBT group that exists outside of Lomé. They face an enormous amount of discrimination and adversity from their friends and families, and have little support from anyone except the AED community. There is such a high level of denial in regards to the existence of gay men in Kara that recently, Johns Hopkins did a study to in order prove that gay men exist in Kara (shocking) and to identify the health services and support groups that they need. As most of the men in attendance of the party were young, we have hope that with the help of organizations such as AED and Espoir Vie Togo, the current stigma gay men face will decrease over time and more support for these groups will emerge.
AED’s Community Health Worker Program- Part 3: The Future
Published: September 3, 2013
We were fortunate to visit AED at an extremely exciting time for the Community Health Program due to the numerous transformations that are occurring that will allow the program to continue to improve and increase it’s impact.
Not long before our arrival, the CHW program hired a new director named Marie. A recent graduate from the Université de Kara and a native of the region, Marie is full of energy and fresh ideas on how to help improve the efficiency and effectiveness of the program. One of her first goals is to introduce a standardized form for Community Health Workers to use during the visits with their patients. The goal of the form is to ensure the CHWs are asking questions that will allow them to better understand their patients needs and direct their patients to the proper care and services. During our time shadowing the CHWs, we noticed that certain CHWs were better than others at ensuring ahead of time that their patients knew they were visiting that day, asking the right questions during the visit, passing on information regarding AED’s services, and building strong relationships with their patients. Marie will work with the CHWs to determine their strengths and weaknesses and facilitate an environment in which the CHWs can learn best practices from one another. Additionally, Marie aims to keep better records not only of which patients have been visited per month, but also which patients have been missed, in order to ensure that no patients fall through the cracks and go unnoticed.
Marie’s passion and enthusiasm will have an even more substantial impact due to AED’s push for improved monitoring and evaluation of their CHW program. One of the ways in which Hope Through Health and AED aim to increase M&E in the program is through the integration of an mHealth program. Hope Through Health/AED recently received a grant to fund a pilot program of Dimagi’s CommCare Platform, a mobile technology platform that facilitates real-time communication between CHWs and clinic staff, as well as allows for better documentation of CHW visits. The data collected can be easily transferred into Excel, which AED’s Monitoring, Evaluation and Quality Director, Emmanuel can then use to perform analysis on the capabilities and impact of the program. Not only are there CHWs at AED’s main clinic in the city of Kara, but there are CHWs that work at each of AED’s four satelitte clinics that spread throughout the entire region of Kara. Therefore, the CommCare platform also aims to improve coordination between CHWs and clinic-based staff in all 5 of AED’s sites. HTH has worked with Dimagi to customize the application to meet the needs of AED’s CHW program, and plans to roll out the project within the next few months.
The GIS project that we have been working on this past month also aims to help improve the monitoring and evaluation capabilities of AED.
Within our first two weeks of data collection, the CHWs were able to map 50 of the patients they serve. We also asked the CHWs to map where they live, so that we can calculate how far they have to travel to visit their patients. During our time, we were able to map 4 of AED’s 5 clinics, and we hope that Kante, the last clinic, will be mapped soon. By mapping the clinics, we can address questions such as “how far do patients live on average to the nearest clinic?” and “how far do patients live from the main clinic in Kara?”
Below is a map of Togo with the region of Kara highlighted in yellow and the locations of four of the five clinics mapped, each labeled with their respective name.
Since all the CHWs using the devices worked at the main clinic in Kara, the patients are concentrated around that area. When the CHWs at the satellite clinics begin to use the GPS devices, we will be able to better see the spread throughout the region.
By using the distance matrix feature of QGIS and the 50 patient points we collected, we know that CHWs travel as little as about 50-60 m from their home to a patient’s house and as far as 8.8 km. We also know that of the 50 patients mapped, 30 live within a 5 km radius of the clinic in Kara and 9 patients live more than 10 km from their nearest clinic.
The GPS devices also have the ability to track routes. As Togo is a country without addresses or even street names, and many patients live far from main roads in areas that can only be reached through winding footpaths, it is often difficult to find patients. Currently, the CHWs rely on their memory to figure out where someone lives, but this information can be lost in transitions between CHWs and it also makes it difficult to add new patients to the program, since first they must put it in the upfront cost of tracking the patient down. The GPS device can use coordinates, previously marked points, or previously saved tracks to guide the CHWs to where a patient lives. You can also use the tracks to more accurately measure the distance CHWs travel, since their paths are never straight lines from their home to the home of a patient.
With an integration of an Access database, the applications of GIS continue to expand. By connecting health information from the database to the corresponding patient points, one can analyze patterns in disease and potentially better target prevention methods to particular regions.
With a new, young director, recent funding to pilot an mHealth project, and a push for more monitoring and evaluation of the impact of the CHW program, the importance and capacity of the program will only continue to increase.
As Togo has only 4 physicians and 19 nurses per 100,000 people, AED’s CHWs serve a vital gap in ensuring that even the most vulnerable and remote patients are not denied life saving care because of their socio-economics status. While CHWs have been hailed has a panacea for developing countries lacking strong medical infrastructure, there are still many gaps, inefficiencies and challenges to be addressed. Hope Through Health and AED are working to address these gaps through leveraging technology and the use of real data with the hope of not only improving the system for the region, but also proving that their methods are effective and should be adopted on a national-level. As we go forth with our partnership with HTH and AED, we are excited to see the transformations pan out, and hope to be able to continue to contribute to the strengthening of the technological capacity of their services.
AED’s Community Health Worker Program– Part 2: An In-depth Look at Home Visits with Koffi
Posted on August 27, 2013
During the second week of our trip, I was lucky enough to have the opportunity to shadow six of AED’s community health workers (CHWs) on their home visits and to learn more about the program, while monitoring their use of the new GPS devices we brought over from MIT. To give you a better sense of the importance of the CHW program and the work that AED does every day, here’s a detailed account of my morning with Koffi, who just started working at AED two months ago and has been bursting with energy and enthusiasm every time we’ve met with him.
I met Koffi at 7:30 on Wednesday morning at a busy intersection on the opposite side of town from the clinic, and from there we walked back to his house to map it. He lives about a 2 hour walk from AED, so he has to get up very early to get to Monday morning staff meetings on time, and really has to plan out each trip in to the clinic carefully. At Koffi’s house, I met his wife and newly born baby, and his wife told me how proud she was of the work that he was doing. From his house, we started by walking farther out away from the city, and passed through rice patties, plots of soy and peanuts, and (obviously!) more corn fields.
Each walk between patients’ houses took around 45 minutes through relatively remote areas. On the way, Koffi pointed out interesting plants and landmarks to me, such as the house of the son of the current president of Togo, and letters spelling TOGOCEL (the larger of Togo’s two cell phone service providers) in the distance, written on the mountainside just like the Hollywood Sign. As we were approaching the first house, Koffi told me the story of the patient we were about to visit and her history with AED.
A wife and mother of four, this patient is the only HIV-positive person in her family. Six years ago when she and her husband were considering getting married, they went to AED to ask for advice on how to prevent transmission of the virus to him. AED provided them with lots of information as well as counselling individually and separately, with one goal being to make sure that the couple was really in love and that the husband would stay with the wife even if things became difficult for her health-wise. Six years and four HIV-negative children later, it was clear to me from the visit that the couple was very much still in love, and that they had been following AED’s advice and instructions on how to live healthily and prevent HIV transmission. When we arrived, the husband took over the cooking and other housework so that the wife could talk to us without distractions. We stayed for about 40 minutes talking about everything ranging from the content of her last clinic check-up to how their business selling food at the market was going. Koffi wrote down literally everything the patient said in his notebook, and also went so far as to copy down everything in her medical journal and vaccination booklet that had been updated since his last visit. He asked if she had any questions, and the patient explained that she had received conflicting information by different staff members at the clinic about when her newborn baby should get certain vaccines. Koffi told her what he thought the correct timing was, so that next time she goes in for a visit she can make sure to ask for clarification and get it right. Then, the patient’s husband asked if they could come in to the clinic to be re-tested (him and the four children) just to make sure that they were all still HIV-negative. He explained that they had tried to go in to the hospital to do the tests but the hospital made them pay and they really couldn’t afford the price five times over. Koffi reassured him that they could come in to AED for testing any time, and informed him that a new law had been passed making HIV testing free everywhere, so the person at the hospital must have been cheating them. Koffi and I played with the children for a little bit, and then the entire family walked us out to the main road about a kilometer away before saying good bye.
Koffi’s second visit was to a single mother of two who had been in the hospital the week before. In Togo, hospitals do not provide food, sheets, towels, or medicine. Instead, while hospitalized, patients need to have a friend or family member taking constant care of them and must rely on their friend or family member to bring them food, do their laundry, and fill prescriptions. Unfortunately, this patient didn’t have any family members to take care of her, so for that entire week Koffi came multiple times a day – early in the morning and late after work, sometimes even during his lunch break – to bring her food, fill her prescriptions at AED (where the costs are much lower), and keep her company. During our visit, the patient expressed over and over again how thankful she was to AED for “saving her life” and giving her 6-year-old HIV-positive daughter a chance to grow up happy and healthy. She told me that Koffi had become like a father to her, especially in the absence of any family of her own, since he was always there to comfort her, to take care of her, and to put her needs above his. It was clear that Koffi had been going above and beyond his responsibilities with this patient. What really struck me the most about both visits was that Koffi had managed to cultivate such close relationships with both families in only two months!
Koffi took me on two more, shorter visits that morning, to the houses of patients who were supposed to go in to AED that afternoon for ETP (Education Theraputique), a monthly class reminding patients how to take their ARVs correctly. The previous ETP had disappointing turnout, so Koffi wanted to make sure his patients understood the importance of the class and remembered the time and date. At each of their houses, Koffi explained to the patients how much more effective their ARVs would be if taken correctly, and emphasized that the experience of going in to the clinic and hearing instructions from the physicians assistants was a necessary complement to the home visits he had been doing. The patients both raised the concern of not having enough money to take a motor taxi in to the clinic (about $0.50 each way), but Koffi encouraged them to think about how much their health was worth, and never once during the conversation told them that they had to go to the class. Instead, he focused the conversation on trying to tease out their concerns and hesitations so that he could better understand their situation, and they could better understand their health needs.
A couple of things really stood out to me in the way that Koffi conducted his home visits. He had managed to position himself as an ally and a friend rather than as a policeman coming to make sure that patients were taking their medicine correctly in order to catch them in their mistakes. Part of that was due to the simple but powerful question he asked at the end of every visit, “do you have any questions for me?” Togolese healthcare does not emphasize patients’ agency nearly as much as we do in the United States, and patients will rarely hear the diagnosis or results of their visits, and are prescribed medicines to take without being told what they are for or what effects they might have. During his home visits, however, Koffi provides patients with one of the only opportunities they get to ask questions, learn about their own health care needs, and feel empowered to make decisions that can positively affect their health. Koffi’s dedication to his patients, his compassion, and his seemingly endless supply of energy makes him someone to watch as AED’s community health worker program continues to expand and reform.
AED’s Community Health Worker Program – Part 1: Structure and Recent Changes
This is the first blog post in a three part series on AED’s Community Health Worker program.
Posted on August 24, 2013
AED’s community health worker program is an integral part of the services the clinic provides and has been looked to by Togo’s Ministry of Health as a model for care.
Recently, AED’s CHW program has been experiencing significant changes, as AED and Hope Through Health have been putting a substantial amount of resources, careful thought, and energy into revamping and expand the program. In the past few months, AED switched over from having around 45 part-time, volunteer community health workers to having only 15 full-time, paid CHWs in the hopes of systematizing and increasing the capacity of the program. In the past, there were department-specific community health workers, meaning a group of CHWs that visited pregnant and new mothers in the PMTCT program, and another group of CHWs to visit patients under 18 who make up the OVC group, etc. However, the new goal is to instead have every community health worker trained to conduct any type of home visit, so that they can stay connected with a patient throughout the patient’s journey with AED, no matter what program the patient is in or what occurs in the patient’s life. AED also recently brought in a new director of the community health worker program – Marie – who is young, enthusiastic, and full of innovative ideas for the future. Another major change is transitioning from the current, more colloquial job title, accompagnateurs (literally accompanyers), to the more professional and more widely used term agents de santé communautaire (closer to the English community health workers).
During the first week of our visit, we had the opportunity to sit down and talk with a group of CHWs and here are some of the things that we learned:
Community health workers are currently assigned patients based on location, with each one serving approximately 15 patients that live close to their house. They visit each patient at least once a month, trying to make it back for extra visits for special cases such as newly diagnosed patients or patients who have recently been hospitalized. Overall, the community health worker program manages to visit about 130 patients per month, but AED has high hopes for the future of the program, aiming for numbers as high as 1000 patient visits per month once the new program is in full swing!
Talking to the community health workers, we were able to obtain a sense of the challenges that they face when trying to visit patients. As Togo has no addresses or even street names, it is often difficult to locate a patient on the first visit. Additionally, patients tend to move often, and community health workers have to go door to door, asking around to find out where the patient has moved. Even when they do have the patient’s location correct, they often show up to the house only to find that the patient is not at home. Most of the CHW visit their patients by foot, making the fact that they have to return multiple times to a patients house even more of an annoyance. Yet despite these difficulties, the program has been effective in connecting patients to care when needed and ensuring patients are properly taking their medications. In a country in which HIV is still stigmatized and patients often do not take agency of their own health, the importance of the community health worker program cannot be overemphasized.
During the following week, we were able to shadow the community health workers on their home visits. The next blog post will detail our experiences during those visits!
To Go From Togo
Posted on August 21, 2013
Jake’s project ended this past weekend, and below is his final blog. Alicia and Laura will be in Togo working with AED/HTH until the end of the month!
Kevin told us “If you come here looking to change things, you are going to be disappointed.”
Kevin Fiori founded Hope Through Health, the organization that structurally and financially supports AED and who is GlobeMed at MIT’s partner organization. He told us the story of when he first came to work at the AED clinic as a Peace Corp Volunteer, before Hope Through Health, back when it served only sixty HIV positive patients and maybe half of those would survive the year. This is the story as I remember it.
It’s Kevin’s first real day in Kara, having just arrived the night before. Christoph, the current Director of AED, calls him first thing in the morning and (in French) tells him that they are going to visit the hospital. Kevin’s French is poor and he only understands bits of the conversation, so Kevin goes to the hospital, expecting to meet some of the clinic’s patients.
Together, Christoph and Kevin enter the hospital complex, but instead of going to visit patients, Christoph leads them to the back of the hospital. They enter a room and Kevin realizes it’s the morgue. And in the morgue, Christoph shows Kevin the skeleton of a twelve year old girl who had died from AIDS.
Except it isn’t a skeleton of a twelve year old girl, it’s just that the skin is so tightly pulled across her bones, the eyes are so sunken, and there is so little of the twelve year old girl there that it’s no surprise you’d be mistaken at first glance. And with this girl, this corpse, between them, Christoph looks at Kevin and says “If you can’t deal with this, you don’t have to be here.”
I understand what Kevin meant when he talked about change. Things are broken here, and I don’t see how they could be fixed. The amount of money wasted, the inefficiencies and nepotism in governmental jobs, the bribery that is necessary just to get basic things done. It seems on first glance that each person in a position of power is out to enrich themselves at the expense of anyone and everyone. When you get here, you start asking questions that always end up hitting some larger problem that is all because General So-And-So’s brother-in-law was offended by So-And-So, who belongs to a tribe that is centered in Togoville, and now no aid workers from that area can register as local NGO’s and work on improving the quality of health care for a farmer whose been harvesting yams for thirty years and whose one want in life is that their kid doesn’t die of diarrhea.
And then I look at the clinic. When Hope Through Health was founded to work with the AED clinics following Kevin’s time in the Peace Corp ten years ago, AED didn’t have a building and they served about 60 patients, maybe half of whom had any chance of making it through the year.
And now they serve over 2000 patients and are staffed almost entirely by locals. There are full time community health workers who travel to patients’ houses, some more than 20 km away, and they are starting to get electronic records of their patients so that they can track their care. There is talk of offering general healthcare instead of just services for HIV patients, and even thoughts on how to use the internet (which was being installed as I left) to maximize the efficiency of data collection and better connect to AED’s satellite clinics.
And I can’t help wondering if maybe if this is what change looks like.
Currency Exchange: The Worth of a Dollar
Posted on August 17, 2013
Every winter someone I know works at some financial services firm with a strong focus on hard numbers analysis, Jane Street being foremost among them. One thing they always brought back, and that has always stuck with me, is how they calculate the relative worth of objects. It’s easy to see that, if you make $30 dollars an hour and are willing to spend $120 on a ticket to a concert, then a concert is worth four hours of work.
I guess what I find interesting is that a parking meter for an hour is worth 1/30th of a concert, an oil change costs twenty avocados, or a plane ticket home is worth forty John Grisham books. It gives you a way to abstract money out of the equation a little bit, and makes you get a little perspective on what, exactly, things are worth.
I only bring this up because this kind of comparisons simply don’t work here in Togo. To travel around the city, you flag down a passing motorcycle and ask them how much it costs to get where you want to go. Usually it’s around 150 CFA, but a foreigner can expect to pay around 200 CFA. There is an initial knee jerk reaction to the difference in treatment, but the truth is 50 CFA is about $0.10.
Now, what do we normally consider the value of ten cents? Ten cents is usually under the threshold of the amount of money people actively care about. If that money drops between two couch cushions then that money might as well be gone. Some people don’t keep change under a quarter, usually dropping the excess dimes and nickels into the tip drawer due to the pain of having to carry around “useless” change. Those tiny dimes aren’t even good for coin flips, yet four of them will pay your way across an African city.
One wonders what the Togolese see in the backpacks of visiting foreigners. The average Macbook is three times the average annual income of a Togolese. A nice DSLR is double. Even the REI backpack is 1/4th of everything they earn in a year, while a pair of Gap Khaki’s is a 1/10th. You wonder if they feel what you feel when you see when someone drives a $150,000 sports car, about three times the average US annual income, down the road.
At the clinic, there was previously a monthly membership fee of 500 CFA, or ~1 dollar that helps cover the costs of the upkeep of AED. They found that some people couldn’t afford it, so they lowered it to 300 CFA, or ~60 cents. Some people can’t afford that either, and while they try to give out exemptions, it is not always possible, and people are turned away. Patients are also required to pay 100 CFA (~20 cents) in order to fill their entire prescription, which may include numerous drugs and large quantities of pills. This medicine may be needed to treat a case of malaria or some other opportunistic infections, which commonly inflict HIV patients. Yet, many patients can’t afford this either despite the fact that AED provides services at a heavily subsidized price. At the hospitals and other clinics, costs are much higher — the average hospitalization cost ranges from ~30 to 74 US dollars. Patients who can’t pay are turned away and many families go bankrupt trying to save a loved one’s life.
Makes you think about what a dollar is really worth.
After a week living in Kara with Andrew’s family, we’re starting to get a sense of what daily life in Togo is like and how it compares to life in the US. One of the first big differences we noticed, especially while simultaneously trying to get over our jet lag, is that the day starts much earlier here. Normal work hours are from 7:30am to 12:30pm, and 2:30pm to 5:30pm (with a 2 hour lunch and nap break in the middle!). With commutes ranging from 5 minutes to an hour by foot each morning, the whole city is typically awake by 5:00 or 5:30am and out and about by 6:00. People tend to go to sleep much earlier here too, and the streets are empty and quiet by 8:00 or 9:00pm. My best guess for why this is the case is that Togo sits at the far Eastern edge of a huge time zone that continues all the way to the Westernmost part of Africa in Senegal, which means that the hours of daylight are much earlier here than we’re used to. There are no street lights, so when it’s dark outside it’s really dark, and there is really no reason to be outside. The early mornings combined with jet lag and the (gasp!) absence of coffee has made waking up and getting to work difficult, but our daily commute makes it worth it!
Adabaoure, the neighborhood that Andrew’s house and AED are in, feels rather rural despite being only 2 miles from the center of Togo’s second largest city. Our 5 minute walk to work takes us on dirt paths over tiny streams that pop up during the rainy season, and through corn fields that seem to be planted on every available inch of land within the city and throughout the countryside. Each morning feels like crossing a petting zoo to get to the clinic, with baby goats, ducks and chicks following their mothers around and the occasional dog, pig, turkey and guinea fowl along the path as well.
The other big cultural difference that we noticed immediately is how much more of an emphasis Togolese people put on their presentation and personal relationships and interactions. Everyone dresses very nicely to go out each day, with dresses and complets, two-piece matching outfits, made out of beautifully patterned cloths and vivid colors. AED’s secretary explained to us how dressing nicely is crucial, especially for someone in her position who would influences visitors and guests’ first impression of the clinic, and she clearly had immense pride for the work that she does. Greetings are incredibly important, and people will say bonjour or nlewa le (good morning in Kabiye, the dominant language in the North) to each and every person they pass on the street. At the clinic or with people you know more personally, the greeting is followed by a long list of questions to ask, “how is your health?”, “how is your family?” even venturing in to the abstract “how is your patience today?” I’ve really loved these types of daily interactions, because they help create a more cohesive community atmosphere in the neighborhood and in the clinic. Each day we learn a little bit more about which staff members’ children succeeded in passing the BAC – the big test that allows them to graduate from high school – or who just got back from taking a vacation and how it went. We’ve met nearly everyone that lives along our route from Andrew’s house to the clinic, from the teenage boys that sit outside and play the same board game every day to the little children who think that Andrew is Chinese and therefore greet him affectionately with “Ni-how!” when he passes them.
There are children everywhere in Kara, and they play a much more prominent role in daily life than they do in the US. The streets of Kara feel much safer to me than the streets of Boston, first and foremost because there are almost no cars driving by, and so kids play in the streets together all day and help their parents with household tasks. Many people also bring their children to work with them, and when they do everyone in the clinic gets excited and wants to talk to the kids and pick them up. Unlike America were it would weird or even perceived as threatening to go up and talk to or touch a stranger’s kid, here it is common, and just another way of expressing affection. In general, people seem to be much more trusting.
Overall though, there are more similarities than differences between the people here in Togo and back home. Kids beg their parents to buy them candy and sugary drinks, people follow the local soccer and wrestling matches closely, and the comedy skit show that was playing during our bus ride up to Kara from Lomé featured the same type of goofy and slapstick humor as Saturday Night Live. In 2012, The World Happiness Report ranked Togo as the least happiest country in the world, but based on our experience here so far, that seems completely ridiculous and extremely unlikely. Everyone that we have talked to so far has greeted us with wide smiles, incredible warmth, and a distinct sense of pride for their country and the work that they do. The streets are filled with laughter, as well as games and music. Although people here in Kara face significant challenges beyond what many Americans could imagine, they seem to have little trouble staying positive and enjoying their daily lives as much as we have since arriving!
On Monday morning, we received a tour of the clinic immediately following the weekly staff meeting. Although rather run-down, with cracks in the floor and a leaky roof, the clinic has a very professional atmosphere. The staff is dressed very well, some of whom Andrew jokes “look like they are going to prom,” and were all working diligently as we came in and out of their offices throughout our tour.
One of our first stops was the pharmacy, where the two pharmacists were inputting information into one of the six laptops brought over in January. The two women, Alice and Nadege, showed us the new excel spreadsheet that Emmanuel created after the computer literacy training with Liz and Sherry in January. Prior to the training, the pharmacists were keeping handwritten records of all pharmacy transactions for the 1200 patients they serve, as well as to keep track of the pharmacy stock. In Sherry and Liz’s blog post titled “Meeting our Partner,” they described their tour of the clinic and remarked that they “chatted with two pharmacists and observed them noting prescription transactions on stacks upon stacks of paper that have been turned in their binder too many times.” Only 7 months later on our tour, we did not encounter binders of worn out papers, but instead a computer with a spreadsheet containing all the information that had been previously stored in those stacks of paper.
While chatting with the pharmacists, Andrew did a quick calculation using the spreadsheet and within second was able to tell us what percentage of prescriptions had been filled within the past month. This would have been impossible to determine so quickly if the information was still trapped within piles of paper.
Emmanuel, the Director of Monitoring and Evaluation (shown above), also shared with us the impact the computer literacy training program has had on his work. He told us that “before the training with Sherry and Liz, we knew nothing,” but now he has become proficient using Excel and enjoys working with the program. Since the computer literacy training in January, Emmanuel has been creating Excel spreadsheets to record and monitor data from the clinic. This data ranges from how many patients were served at the pharmacy each month to what dates each patient came in for a clinic visit and what tests were performed then. In addition to the basic recorded information, Emmanuel has extra columns in each spreadsheet that keep track of his own created indicators to do rudimentary data analysis on what comes to him from each department. He was able to tell us almost immediately how many of the patients served by each department were new to the program or had recently started on ARVs, or which patients the clinic had recently lost contact with.
While this is a significant improvement from just seven months ago, there is still a lot of room for improvement. Emmanuel is currently the primary person entering in all the data by hand, as he is afraid that if others do it, they’ll mess up. This means he has a lot of busy work each day that takes away from the more important monitoring and evaluation work he could be doing. Additionally, the spreadsheets contain a lot of repeated information. Each department’s spreadsheet has one page with the master list of patients, which means that wherever there are changes made or new patients added, these changes have to be manually inputted once for each department, risking mistakes and inconsistencies. Many of the reports that Emmanuel is responsible for submitting – to Hope through Health, the Togolese government, and other HIV/AIDS organizations that they work with – are concerned with the total number of patients served by each department each month. Emmanuel goes to great lengths to make and automate these calculations, since the spreadsheets tend to be organized by individual interactions and he has to make sure not to count redundancies such as a patient that filled two different prescriptions at the pharmacy. This problem is another large time sink and a potential site for introducing error.
Jake’s new database project hopes to address each of these problems by introducing wireless Internet and Access, a program that would provide a much simpler user interface for data input by each department, and a more efficient way of linking information between sheets and entries. Data input pages for each department will look more like forms to be filled rather than spreadsheets, and will include built-in checks on the information submitted, such as a recommended maximum number of pills prescribed to a patient, so that if someone accidentally types 200 pills, the form would prompt them asking, “Did you mean 20 pills? 200 is larger than the maximum prescription size”. With a much more intuitive and error-resistant interface, Emmanuel can trust more people at the clinic to input data, allowing him to use his time more efficiently. Access also allows for patient information to be linked between many different pages, so that there would only be one main ID number and entry per patient which would be linked to each departments’ information corresponding to that patient. This includes prescriptions, clinic visits, most recent CD4 count, etc. All the information would be interconnected between all the computers in the clinic using intranet routers so that any change made on one computer would immediately be updated and available to any staff member looking at their file.
Mid-way through our initial planning meeting with Emmanuel, he stopped to ask, “Will I have to re-input all of the patient data by hand once we switch over to the new database?” horrified of the prospect of needing to do that much overhead work again. We told him that no, everything could be imported over from his Excel workbooks, to which he responded, “Thank you so, so much. It took me a whole year to transfer the clinic’s records over to the computer, I did not want to have to do it again!” Emmanuel seems most excited about the potential of the new database to eliminate the double-counting of patients, generate his monthly reports.
We have arrived in Togo and have enjoyed our first few days at the clinic! We have just gotten Internet connection and will try to make up for the lost time by furiously writing blog posts! But first, we will update you on our journey here and the projects that we will be doing.
Flying in from different parts of the country and making it through security with our collective arsenal of 9 laptops, 2 routers, 6 GPS devices, computer mice, and mousepads, we met up in New York City and took off to Accra, Ghana.
In Accra, Andrew, the Program Director of Hope Through Health, thankfully met us at the airport. Without him it would have been difficult to manage the chaos of the rest of our journey. After a few taxi difficulties, not reaching the border before it closed, and spending the night in Ghana at the Thanks Hotel, we finally made it to Togo. We caught the bus to Kara right before it left. In Kara, we took motor taxis to Andrew’s place, and were impressed by their ability to balance our large suitcases as they maneuvered through the streets. We are staying in a small room right next to Andrew’s place and have been enjoying Andrew’s wife’s wonderful cooking and learning more about Togolese culture.
This is GlobeMed at MIT’s first official GROW trip and second trip to Togo. We are excited to continue building upon the work that Sherry and Liz did during the month of January. Though our projects are different than the computer literacy training program they did, they have the same goal: to improve the technological capacity of Hope Through Health’s clinic.
Aside from me, the Summer 2013 team consists of Jake Bograd-Denton (’14) and Alicia Singham-Goodwin (’14). Jake’s project focuses on developing an Access database for the clinic and helping to develop and craft a long-term data management strategy for Hope Through Health (HTH). I will be teaching the community health workers how to use GPS devices so that they can map the locations of patient’s residence. This will help HTH better understand the distance patients have to travel in order to access care, as well as allow HTH streamline the routes taken by the CHW in order to visit patients. I’ll also be teaching the Director of Quality, Monitoring, and Evaluation, Emmanuel, how to use Quantum GIS in order to map incidence rates of opportunistic infections and better target intervention methods. In addition, Alicia and I will be continuing upon the computer literacy training program in the four satellite clinics: Bafilo, Ketao, Kante, and Kabou. Fluent in French, Alicia will also be translating and helping both Jake and I implement the database and GIS projects.
Having had the opportunity to work on development projects in other countries, one of the reasons that I am so excited for this trip and what sets this apart from other projects I have worked on is the GlobeMed model. GlobeMed’s model of partnership allows us as college students to have the most impact possible in the field of global health not only because we have so many resources but also because the whole idea of partnership leads to genuine, organic projects that meet the needs of our partner and the community they serve. I am grateful and proud to be part of such an exceptional organization, and I know this gratitude will only continue to increase throughout this trip.
I want to thank all members of GlobeMed at MIT and all those who have supported our work throughout the year! Stay tuned for future blog posts and updates about our projects.