The Bigger Picture
Aarti Thakkar, 2017-18 NC Albert Schweitzer Fellow for Life
The following paints a picture of Aarti’s work as a 2018-19 Doris Duke International Clinical Research Fellow.
Here’s the scene:
The pastel painted brick clinic stands apart from the rest of town. It is well-maintained with brightly colored birds of paradise and rose bushes lining the walkways while Mount Elgon towers over the scene.
There are dozens of patients waiting to be seen. There are mothers with small children, sons with their elderly fathers – all ages, all states of health. Those who arrived early are seated on wooden benches in the waiting area, while the others look for spots under shady trees to lay out their brightly colored blankets to protect them from the sun. It’s 9 am, and some patients have already been seen by the triage nurse, while others stand in line to get their weight and blood pressure taken. There is a sense of order and peace as the clinic gets ready for the day.
Soon after, the clinician arrives and gathers the growing stack of handwritten charts. “Sasa? Poa.” Casual greetings and handshakes are exchanged. They all know him, because, well, they’ve been seeing him for years. He knows them too, and their stories, and their illnesses. One by one, the patients trickle into the Spartan clinic room-just a bed, a table, and two chairs. The provider brings with him a portable EKG machine, so that the patients can get their measurements taken and read immediately to inform treatment. A few of these patients are referred up to the county hospital for further management and lab investigations, and others are simply told to go to pharmacy, get their medications, and return for follow up. One by one, until they have all been seen.
It’s an ideal picture, but it’s also not the full story:
Some patients left their homes at 4am, gave up a full day of work, and traveled many miles on rocky, unpaved roads just to make it into clinic that morning. The patients who had enough money piled into matatus (mini-vans notorious for having more passengers than seatbelts), whereas other patients had to transverse the hilly terrain by foot. When they have finished their appointment, they will turn around and repeat the long journey. Unless it rains. The rain can turn the road into a treacherous mud pit, which becomes a trap for any patient attempting to travel back on a boda boda (a debatably reliable motorcycle). Other personal circumstances can also prevent the patient from coming in. For example, if the clinic days clash with the harvest or circumcision seasons, patients are less likely to prioritize a disease that is not actively giving them problems.
Sometimes the clinician calls at 10am: he’s held up in another location and won’t be able to come to clinic today. The patients are told to get refills from the nurses and return in one month to hopefully see the clinician then. Similarly, if the clinician cannot bring the EKG machine, the number of referrals to the county hospital goes up. Thus, the time and monetary costs of accessing care continue to build up. From this simple anecdote, it is easy to see how a patient’s blood pressure can go unchecked and uncontrolled for many months at a time, furthering the risk of cardiovascular illness.
These are the realities of patients living in rural Western Kenya. Even when care is available, the patient may not have access.
The clinic described above is part of the Academic Model Providing Access to Healthcare
(AMPATH) program based in Eldoret, Kenya. AMPATH was first created as a partnership between Moi Teaching and Referral Hospital and Indiana University; it has since expanded to include other North American partners including Duke University and Mount Sinai. The program was developed as a community program for HIV. The partnership established clinics across Western Kenya whose sole mission was to find, link, treat, and retain patients with HIV. Today, AMPATH has built upon this core clinical network to deliver comprehensive care beyond HIV. These Comprehensive Care Clinics have services that range from cardiovascular care to oncology to maternal and child health. While research and population health program development are important pillars in AMPATH, the mission above all is to lead with care, with the patient and community at the center.
Included in AMPATH’s outreach programs are Chronic Disease Management clinics. Similar to the one described above, these clinics consist of providers who travel out to rural community sites at least once a month to examine patients suffering from diabetes, hypertension, and other chronic diseases. A pharmacy program was also started at numerous clinic sites to ensure a steady supply of necessary medications. These programs, among other initiatives, have greatly improved many patients’ access to care by bringing the needed resources closer to home.
Even so, there are situations where patients need higher levels of care than can be delivered in a lower level facility. There are also patients who continue to travel hours to be seen at a higher facility when they could easily be managed at a lower level. Then, there are other patient referrals that are simply never completed and the patients are lost to follow up.
This year, I have the opportunity to observe these successes and failures of the care system in hopes of addressing one key question: what is happening when patients are referred between facilities in our health system? Our team has spent the last six weeks traveling to 20+ sites across Western Kenya, conducting interviews, focus groups, and barazas (town hall type meetings) with patients, clinicians, and other key stakeholders. We are also examining patient referral flow to create observational maps of the clinics as well as network maps of referrals between facilities. This represents a lesson that can be applicable to many health system initiatives across the globe: It is impossible to know the full story as a spectator. Instead of assuming patients don’t go to clinic because they are unconcerned about their illness, we may find that they are hindered by transportation or costs. Or we may come to understand that providers are not referring patients because they do not want them to be lost to follow up, not because they don’t know where to refer to. To learn the barriers our communities face, we spend days out at our sites, take the time be immersed with patients and providers, and really listen to their stories. Only then can we start to understand the finer nuances that must be addressed to increase access and improve care.