(IAP ’17) Madeline Jenkins, ’17
Madeline Jenkins (’17, Economics and Computer Science)
Madeline will spend IAP in Togo, where she will be working with a network of HIV clinics on a data analysis project. The clinics have significant data on the survival rates of their HIV patients, but there is concern that some patient outcomes may have been entered incorrectly. Madeline will be working to verify the correctness of the data in this database. Furthermore, she will be working with the clinics’ Director of Monitoring and Evaluation to help develop a work plan for incorporating these outcomes into future annual reports.
Week 3: Endings and Beginnings
January 26, 2017
It’s now our last week in Togo. We have just 4 days left before we’ll be boarding a flight that will take us thousands of miles away from Kara, from AED, and from hundreds of patient record books that we spent so much time inspecting. Our work is almost done, but it feels like the work is just beginning.
The data verification is almost complete. This means the data analysis can begin in earnest. The documentation of the verification process is on its final revisions. This means data verification can be incorporated into annual monitoring and evaluation tasks, so this won’t need to be done at such a large scale in the future. We are almost done compiling our suggestions for better data management. This means the clinic staff can begin implementing these suggestions. I hope these suggestions will help improve AED’s record keeping in the future.
I spent a lot of time this month reflecting on data management and analysis, as well as how we conduct evaluations. The medical record system is pretty bad here – paper records with handwritten notes and dates. Identifying patient codes are mistranscribed. Names are misspelled. Boxes of records can be misplaced. And while the medical record system in the US is certainly better, it’s still not great. It’s hard to cooperate across multiple clinics and providers, because they don’t have easy access to their patients’ records.
While it was sometimes frustrating and never particularly glamorous to work to track down 1480 patients (from the memories clinic staff, paper records, pharmacy records, phone calls, and soon home visits), I always had the sense that I was doing something valuable. My work mattered to the clinic and, in turn, matters to patients.
I am hoping I can continue doing this kind of work after I graduate, even though I will be working at an economic consulting firm. There are a fair number of my future coworkers involved in pro-bono work, which I am planning to do as well. It’s even possible that I could continue collaborating with Hope Through Health by connecting my firm’s pro-bono group with their work. I think this could be very valuable, as it would allow HTH to access more experienced analysts who could help improve and expand their monitoring and evaluation efforts. I also believe this could be a good springboard for me to get more involved in social impact monitoring and evaluation after my consulting stint.
In Togo, I’ve had a lot of time to think and reflect on my life. I’ve thought about philanthropic work and what it means, and how the work I’m doing here fits into that. When I return to MIT I’ll be starting my last semester as a student, and not long after that starting my first real job. It feels like the beginning of the rest of my life, and I don’t know exactly what I want that to look like yet. I do, however, feel confident that I want my work to make a net positive impact on the world. I hope that as I continue to learn and grow, my contributions will become more and more useful. Our time here, like our work here, is coming to an end. But there is so much more that is just about to begin.
Week 2: Thoughts on HIV Mortality
January 19, 2017
Technically, HIV doesn’t kill people, opportunistic infections secondary to AIDS do. And even though everyone seems to assume the ‘AI’ in AIDS stands for “autoimmune,” it actually stands for Acquired Immune Deficiency Syndrome. It’s not an autoimmune disease at all. HIV attacks the T-cells of patients’ immune systems, weakening their defenses until they are susceptible to a variety of infections that seronegative people can easily fight off.
Togo is a former French colony, and it’s still Francophone (even though there are around 40 other languages spoken in Togo, mostly smaller tribal languages). In French, AIDS is ‘SIDA’, which coincidentally sounds like a word that means ‘death’ in one of Togo’s other 40 languages. I know all this. I know that people die of opportunistic infections in Togo. I’ve been collaborating with this clinic for the past three and a half years. I know the fundraising talking points, I know the stories of sick patients who made near-miraculous recoveries. None of this is new.
And yet none of it could really prepare me for how it feels to hold an old patient notebook in my hand, with DCD splashed across the front cover in big, black letters, drawn on with permanent marker. DCD, décédé, deceased. I’m checking that the clinic’s electronic records are correct, that this patient has actually died. But I’m thinking about the woman who held this notebook in her hands, years ago, waiting in the halls of this clinic, seeking treatment for her illness. I’m thinking about the notebook that says “AGE: 17” for a teenage boy who died in 2012. He’d be a young man my age today. The ones that hit me the hardest though are for the youngest children, the three year olds who probably contracted the virus while they were being born. In 2015, Togo had the 24th highest under-five mortality rate in the world, at 78 deaths per 1,000 births. This is 11 times higher than the U.S. rate (data from the UN).
I don’t think the patients at the clinic really have any idea what I’m doing here. Mostly, white people are a bit of a curiosity. Togolese people are kind and welcoming, partly because that’s their culture and partly because they seem to appreciate that I am here because I am Trying to Help (whatever that means, even if they don’t have any idea what I’m actually doing to help).
With the clinic staff (and particularly the Monitoring, Evaluation, and Quality Team), however, it’s a different story. I think they really recognize and appreciate the work that we are doing (which makes sense, given that we planned the project with them), which is very encouraging. We were really able to power through a lot of paper records, which while not technically difficult took a fair amount of time. (Time, it turns out, is a fairly scarce resource amongst the MEQ team.) The patients who don’t have paper records are proving to be more difficult – for these, we’ve been speaking with Community Health Workers, the receptionist, and reviewing the pharmacy records to fill in gaps. Slowly, we’re verifying the records of all patients in the database. In the future, this work will be a part of their annual review, so we’re also thinking critically about how to optimize this process going forward.
I am optimistic. I believe in monitoring and evaluation. I believe that mortality studies, while depressing, are crucial to demonstrate the effectiveness of the clinic’s standard treatment regimen. Proving that their strategies work is crucial. If we can convince the Ministry of Health, this could change the HIV standard of care nationwide. If we can convince the development community, the implications could be even larger, rippling across national borders to improve the lives of people living with HIV all over.
Week 1: Arriving in Togo!
January 11, 2017
When I tell people I’m spending IAP in Togo, I often get asked if it’s an island in the South Pacific (no, that’s Tonga) or an island in the Caribbean (no, that’s Tobago) or possibly ‘what country is that in?’. I then advise them that Togo is in fact a country, and not an island at all. It’s in West Africa, a sliver of territory tucked in next to Ghana, largely forgotten by the international development aid community. I am here working with an HIV clinic called Association Espoir pour Demain (in English, “Hope for Tomorrow”). AED is located in a city called Kara in the northern region of Togo, 7 hours by bus from the capital city (and international airport) in the south. It’s actually my second time working with this clinic, the last time was in Summer 2014. It’s great to be back, partly because Togo is lovely but mostly because the clinic staff are super dedicated and hardworking.
I’m here working on a data verification project along with Maggie O’Grady, my travel partner. The clinic has a lot of data on their patients, and metrics like survival rates are important for identifying risk factors and determining how well the clinic is doing in treating their patients. If we can demonstrate that AED is successfully achieving high survival rates, that could mean increased investment from donors and the adoption of their treatment strategy by the Togolese Ministry of Health. However, there are some concerns about the accuracy of the data. These arose due to some suspicious trends in the original data. For example, a large proportion of the patients had reportedly transferred to another clinic, but there are not many treatment options for HIV positive people in northern Togo. This suggests that some of these “transfers” are not actually transfers, but have been recorded as such for some reason.
Maggie and my goal is to verify each of these 1480 patients in their database, so we know that their status in the database is correct. This is relatively simple for the active patients of AED, because AED has their medical records and most of them have been to the clinic in the past few months. We just need to see their medical records and confirm that they’re alive. For deceased patients, it’s also not too complicated: AED should still have the records for patients who have died, and we can check those against our database as well. The more complicated patients are patients who have been lost to no follow up and patients who have transferred, because it’s difficult to know if these patients are still alive or not.
Once we’ve finished doing this for all patients from 2010 to 2015, we’d like to document the process so it can be incorporated into AED’s normal annual review procedures. This will allow our work to continue into the future, beyond our trip. We’ve met with Etonam, the clinic’s Monitoring, Evaluation, and Quality Director, and he’s completely on board. We’ve heard a lot of enthusiasm from the staff about our work, which is super motivating. That’s a good thing too, because we need to work fast: we only have 3 weeks in Togo, and work here tends to move more slowly than it does at home. I’m hopeful though – we’ve made good progress so far, and are beginning to unravel some of the suspicious mysteries in the data. If we get this all verified (and the outcomes are good), it could be big news for AED and have important implications for the future of the clinic.