Dispatches From Uganda

This was translated to the patient in Ateso, the local language. She then pointed to a stack of folders—green, not blue. An easy mistake. But a mistake that wastes precious time in the busy clinic, in which one nurse and a few doctors see a hundred patients a day and are responsible for all the record-keeping. When I learned I was headed to Soroti, Uganda, to work in one of that country’s medical clinics, our long-term goal was ambitious: create an electronic medical record (EMR) system for its diabetes patients. An electronic system would enable doctors to monitor their patients more efficiently and conduct research to see if future interventions (such as patient education) would improve patient outcomes. This would be particularly helpful in Uganda, where diabetes affects at least 750,000 people and is on the rise. (Note: this disease is underreported due to a lack of screening and adequate healthcare in many parts of Uganda.) While EMRs are widely used in the United States, the cost, time and expertise needed to implement and maintain them has slowed their use in many countries, and we were excited to help.

While we knew that we would not be able to implement an EMR system fully by the end of the summer, the early steps in the process took longer than any of us expected.

The first challenge was that the clinic’s existing system was entirely paper-based. Whatever electronic system we devised would have to be built from the ground up.

Another major challenge was the sheer number of diabetes patients who are seen in a single day. They all need to have their blood drawn (which can take a long time if a patient is dehydrated, which is fairly common), have finger-prick tests and have their blood pressure, height and weight recorded. Generally, there is one nurse to take these measurements. (She’s a superhero, but she does have only two hands.) As the example of the colored folders suggests, patients’ data were recorded in their permanent files, which were all paper records, and in the patients’ personal records, which are little exercise booklets that they take with them to and from the clinic. By implementing the electronic system, we would be adding another step, so it had to be quick and simple—and ultimately save staff time.

Another hurdle the clinic struggled with arose because of the lack of literacy. The language is more commonly spoken than written, and it can be confusing to try to determine if two patients with similar-sounding names are in fact the same. Often, the same village name is spelled many different ways. This can make it difficult and time-consuming to distinguish patient records.

Once we better understood these realities, we worked with the clinic staff to arrive at a practical system that would ease their daily work: assigning a diabetes reference number to each patient and creating an Excel spreadsheet to input baseline data. We worked with the staff to implement this system, which is based on the model the hospital currently uses in its HIV/AIDS clinic. We created a handwritten registry to match our electronic database, assigned every patient a number, organized the permanent paper files numerically and installed a filing cabinet. This system will make it much easier for the staff to find a file and look up information for a specific patient, saving valuable time. Ideally, this system can also be used to track individual patients and the clinic’s patient population over time and will smooth the transition to full electronic medical records.

During our last week in Soroti, we met with the permanent staff to discuss how the project will continue in our absence. It was exciting to hear about the full database system that the clinic plans to implement. Furthermore, now that baseline data have been recorded, evaluation of diabetes patient education will commence.

The staff appreciated our efforts, and I felt a real sense of partnership. Even though data collection and entry may not be the most glamorous aspect of global health, the staffers expressed satisfaction that their number-one priority was addressed this summer.

I came to learn the importance of listening to the priorities of the local staff, rather than our own. It might mean completing a seemingly simple task such as moving all of the furniture. But that act allowed us to bring in a new file cabinet and take care of files that seriously needed sorting. The impact of our actions improved the clinic’s ability to monitor patients, evaluate their overall health and implement further interventions. In the long run, this can be life-saving.

This project reminded us that if we address only our own priorities, the changes we make may not address the biggest problems faced by the staff.

This post originally appeared on September 29, 2016 on The Doctor’s Tablet. 

Diabetes Management and the Power of Patient Education 

Patient education is an essential component of diabetes management. It allows people with the condition greater control over their illness and helps them avoid diabetes-related disruptions in their daily lives. I found this to be particularly true in a resource-limited setting such as Soroti. If patients have a good understanding of the complications associated with the disease—and the lifestyle modifications that help lower sugar levels—they can be empowered to better manage the illness. In fact, Dr. Wilson Etolu, the head of the diabetes clinic at Soroti Regional Referral Hospital, acknowledged this by making the expansion and improvement of patient education a top long-term priority for the clinic.

We were fortunate enough to contribute to this effort by helping Dr. Etolu and the hospital staff develop a diabetes patient-education curriculum that focused on four key topics: nutrition, hypoglycemia, medication administration and diabetic foot care. We contributed talking points for each subject to be discussed in patient-education sessions and helped develop pamphlets for the patients to take home. And in order to evaluate the efficacy of the curriculum, we created tests for patients to take before and after each subject was covered.

It is important to keep in mind that effective diabetes management is highly dependent on environmental and cultural factors. In Uganda, there are many challenges to controlling diabetes. For example, starches and other carbohydrate-laden foods dominate the average diet, and the variety of available food is limited depending on the season. We worked hard to account for these specific factors so that the curriculum would be culturally relevant and applicable to the patients’ lives.

Many patients told us that they had not been aware that certain foods and drinks, such as matoke (plantains) and soda, are high in sugar. One man told us that he started checking his feet regularly for injuries and cutting his toenails with a toenail clipper instead of a razor after attending a session on diabetic foot injuries. It appeared that the patients were internalizing some of the information and it was encouraging to receive such feedback.

There are also challenges with patient education. For instance, during one of our home visits, we spoke with a woman who was trying to completely eliminate carbohydrates from her diet and was experiencing symptoms of hypoglycemia. It was a stark reminder that our actions can have unintended consequences and that there are often difficulties communicating effectively with patients. This experience also highlighted the importance of partnering with patients and the community to ensure that well-intentioned ideas come to fruition.

In Soroti, many patients are highly invested in learning more about diabetes management, and I am confident that the education curriculum can be a sustainable way to improve their overall well-being. However, working with the local health workers and incorporating feedback to hone messages will be critical in ensuring that the patient-education curriculum is a long-term success.

This post originally appeared on November 11th, 2015 on The Doctor’s Tablet. 

Better Records for Better Care 

The idea behind the forms was to have all of the most important patient information in a single place, in a simple-to-read format that the doctors could rely upon. Previously, the doctors had to flip through booklets full of handwritten notes. Important values could be lost among the scribbles of medical histories and chief complaints. It was also difficult to get a sense of the time that had elapsed between tests and treatments.

Information: When Less Is More 

We presented the forms to the faculty and interns for their input. However, once they were given to the staff, the forms got off to a rocky start. Nurses did not always fill out each of the categories and I had to send patients back to get their height and weight taken. I often ended up taking their pulses and calculating their body-mass index results myself. Other staff members were experiencing the same difficulties.

Clearly, the forms needed adjusting. The system would work well only if everyone filled out the charts completely and consistently. Some doctors complained about how long it took to fill out the forms. Without an electronic medical records system in place, it was difficult to show them the importance of standardization. With these complaints in mind, we updated the forms to minimize the amount of repetitive writing the doctors had to do and we edited the forms to include only the most common lab tests and medications.

The Power of Patient Data 

The changes seemed to work. There was less complaining and the forms were being used by the staff regularly. I even witnessed the benefit of the forms firsthand. In our third week at the clinic, a young woman came into the room and walked straight over to me. The patient gave me her papers, and I recognized her from a previous visit.

I glanced at her chart and saw that she had in fact been there the previous week. Looking at the papers reminded me of my alarm over her high levels of fasting blood glucose. At the time, the glucometer showed “HI,” which meant the sugar level was beyond what the instrument could measure. Her HbA1c was also >14%, indicating that she had had uncontrolled blood-sugar levels for the past three months. However, the forms made it simple for me to see the difference in sugar levels between the previous week and the current week.

Good news! Her fasting blood sugar was just where we wanted it. I looked back at the young woman and she was beaming at me. I told her, “Your sugar levels are great. What changed since I last saw you?” She replied that she had followed the diet I told her about and had taken her medication as prescribed. I felt so proud of her. She had realized how important it was for her to eat properly and take her medications after I made it clear how dangerous it was to have such high sugar levels. The forms allowed me to show her where she was in her treatment and where she needed to be in her struggle against diabetes.

She then took her health into her own hands and came back with positive results. I made sure to express how well her changes had worked and indicated that she needed to continue in order to get long-term benefits.

So with a combination of the new intake forms and patient education, there is now an opportunity for patient visits to this clinic to become more efficient. Most important, patients can better influence their own health as they’re shown their progress through time.

This post originally appeared on September 1st, 2015 on The Doctor’s Tablet. 

Unforeseen Circumstances 

Right away we faced several challenges at the Ongutoi Health Center. As a result of advertising our screening over the radio, we faced an overwhelming number of patients. Furthermore, many of these patients had expectations that did not match our skills. After all, we had finished only our first year of medical school and possessed little more medical knowledge than the average person. We did not anticipate that so many patients would expect to receive diabetes medication and “superior” treatment from the American “doctors.”

It was difficult to explain to patients that we were far from doctors and were not allowed to prescribe medicine. It was even harder to explain that they would have to return to the Ongutoi Health Center another day or make the trip to Soroti if they wanted to receive actual treatment.

Changing Tactics 

Largely thanks to Ongutoi Health Center’s administrator, we restructured the screening process midday and began seeing patients at a much quicker rate. The adjustment unfortunately meant there would be less time to educate diabetic patients and build relationships; priority was instead placed on seeing all patients as quickly as possible.

Despite these challenges, we were able to detect new cases of diabetes and encourage a number of patients to seek needed medical help – help they might not have gotten otherwise. By the end of the day, we had seen 250 patients and diagnosed new cases of diabetes.

Lessons Learned 

In the long term, I believe we have helped spur the growth of diabetes-screening clinics in Uganda. Despite our initial difficulties, the structure and organization of our trial could be a model for future screenings.

Furthermore, our project promoted diabetes awareness around Ongutoi, and we hope it will help inspire the ministry of health and other diabetes organizations in Uganda to increase funding for diabetes treatment.

Though we could not educate all diabetic patients ourselves, organized village health teams around Ongutoi plan to visit the homes of patients with diabetes and help educate them about diet, medication, and hygiene, using educational materials that we developed.

Changing the culture around diabetes, given its growing foothold in Uganda, requires reform and action. The action would not have been possible without the warm welcome we received from the community, the Ongutoi Health Center staff, and our Global Diabetes Institute program manager.

As a medical student entering my second year, I am proud of what we accomplished that day and am indebted to the hospital employees for their help and collaboration, and to the local community for what they have taught me. I hope to build on this experience and to provide improved medical care to underserved communities like the one in Ongutoi.

This post originally appeared on August 4th, 2015 on The Doctor’s Tablet.

We spent our first week familiarizing ourselves with the hospital, attending rounds, assisting at the hospital’s diabetes and hypertension clinics and meeting with doctors and administrators to implement our three main projects: data collection, education and a prosthetics workshop. Prior to arriving, I imagined that the hospital here could provide little for its patients. In my first year of medical school, I became accustomed to physicians who are experts in a certain segment of medicine, and to hospital care that requires the use of expensive machinery. SRRH has neither of these. Instead, it has physicians with expert knowledge that extends beyond their own specialties, who are capable of treating numerous patients based on physical examinations alone.

Though I am constantly impressed by the doctors I encounter in the U.S., I am even more impressed by the doctors I have met here. SRRH would benefit greatly if it had more resources. It lacks even the most basic supplies that many of us in the U.S. medical field may take for granted, such as clean note-taking paper. Despite these challenges, the doctors here have created a system of care that employs creative improvisation. For instance, during a surgical round, the doctors used a bag of water as a weight to help lengthen a fractured bone to ensure that the bone would heal correctly.

Consequently, as a medical student in her preclinical years, I have learned much more here in one week than I would have if I had spent the same amount of time in a U.S. hospital. Not a single medical question has been asked that a doctor has not been able to answer, and in many ways, it feels as if each physician here is an internist, a cardiologist, a pediatrician and so on, all in one.

After my first week, I was filled with awe and appreciation for the more raw aspects of medicine that we rarely see in hospitals in the U.S, and I cannot help thinking how amazing care here would be if SRRH had more basic resources, such as space. For instance, I have observed patient beds in the internal medicine ward literally touching each other because there is no other location to see patients, and it is incredibly disheartening to watch competent medical professionals not be able to treat patients simply because those professionals don’t have the means.

Overall, I don’t believe that one type of care (care in the U.S. or care here in Soroti) is better than the other. Rather, I believe that both have invaluable qualities to offer and that an integration of the two would be ideal. For the next few weeks—and, I hope, for years—our Einstein team under the auspices of the Global Diabetes Institute will promote and facilitate such integration at SRRH. I am excited to have the opportunity to be a part of this burgeoning partnership.

This post originally appeared on July 10th, 2015 on The Doctor’s Tablet.

Enter the Einstein GDI 

CMC has close research ties to Einstein. Aiming to address the rapidly growing global epidemic of diabetes, the GDI has fostered a triangular partnership with CMC and Soroti Hospital.

Diabetes has traditionally been considered a disease of the developed world; however, this is a misconception. A staggering 80 percent of new cases of diabetes are in low- and lower-middle-income countries. In Africa, approximately 19.8 million adults have diabetes, and projections for 2035 are as high as 41.1 million. The health and economic burdens of this epidemic are crippling. Our mission is to help alleviate this through visits from our staff and now our students. 

The staff of Soroti Hospital is also committed to this mission, and wants to address the epidemic on a local level. But the hospital faces numerous challenges that include the burden of a large patient population and a scarcity of resources.

How Einstein Students Will Help in Uganda 

To date, the Einstein program has sponsored four Soroti clinicians’ participation in the CMC training course and facilitated their formulation of long-term goals for diabetes care in Soroti. Now we will support their efforts by working on the ground, with six Einstein first-year medical students traveling to Soroti for five weeks this summer to provide assistance. The hospital staff has established clear, attainable objectives for improving the diabetes ward; the students will help them achieve these goals. The project has three main areas of focus:

1. Data Collection: To date, there have been no national surveys published on diabetes in Uganda. We will gather local data on the prevalence of diabetes and its risk factors so interventions can be appropriately designed and their progress monitored.
2. Education: The issues surrounding diabetes—its risk factors and its treatment—are still new to many people in Uganda. We hope to diminish the risk factors by increasing understanding among the general public and health practitioners. We will help by designing a curriculum and disseminating it throughout the region.
3. Prosthetics Workshop: Many people in the Soroti region have had amputations due to diabetes, injury and other complications. Their quality of life is seriously diminished post amputation due to loss of mobility. Many of the patients die within the first year. Additionally, a prosthetic limb in Uganda costs between $250 and $500, which is prohibitive for most in a country where the median income is about $650 per year. We will determine the feasibility of using low-cost methodologies in Soroti, so more people can benefit from lifesaving prosthetics.

Despite the challenges the hospital faces, we are continually impressed by the staff’s passion and dedication to making positive changes. Students this summer will help kick-start these vital projects.

You can follow our progress through periodic posts on The Doctor’s Tablet, and here, on the GDI website.

This post originally appeared on May 21st, 2015 on The Doctor’s Tablet.

I was most amazed by how the hospital and staff were able to run with such limited resources. What I mean by this is that several of the tests and exams we take for granted here in the US—such as an HbA1c machine, an ECHO machine, specialists (the hospital has an eye and ear clinic but no ENT doctor, only an audiologist), proper cancer treatment—all were too expensive for the hospital to have. Most of the aforementioned services had to be performed in the capital city of Kampala, 4 hours away by bus which costs 18,000 Ugandan shillings one-way (about $7 US). Just prior to my arrival, the entire hospital had run out of glucose strips, and luckily I had brought 1500 with me, along with 4 glucometers, which they desperately needed and were so thankful for. Despite these shortcomings, as we might call them in the US, the doctors and interns still provided quality care for the patients, no matter what they came into the hospital complaining of. They seemed catered toward their specific patient population and diseases unique to that group which we don’t see often here. For example, Soroti had adequate treatment for malaria, TB, and other infectious diseases which are very common there.

Sadly though, I noticed a significant lack of education on the patients’ part, in regards to their health problems. Although Dr. Etolu made it a point to teach each of his patients about their condition, modes of treatment, and possible outcomes, it seemed that many of the hospital staff did not place much emphasis on this. While I tried to help where I could, bringing along proper foot care brochures for the diabetic patients and even helping lead a training for health care workers about NCDs (non-communicable diseases), I felt that many of the issues we were seeing could be prevented with proper patient education. Taking a public health approach and enabling them to take ownership of their body and health could reduce the incidence of diabetes and associated complications (and other diseases prevalent in the area). However, by the time I left, the hospital was beginning to emphasize more the benefits of patient education and reducing the burden of disease by empowering patients. Hopefully with this step in the right direction, and a new partnership with the Global Diabetes Institute, Soroti Hospital can continue to improve and provide quality care for the people of Uganda.

The first patient is an emaciated elderly woman who has been losing weight since being diagnosed with diabetes. Her daughter proudly tells us that she has been "withholding food" after hearing in a radio broadcast that patients with diabetes need to lose weight! Fred soberly instructs the residents that patients with "thin diabetes" can be harmed rather than helped by restricting food. A subsequent patient illustrates the perils of treating diabetes when meals are unpredictable...an older woman with finely chiseled features is babbling incoherently, having been admitted a few hours earlier in a coma due to hypoglycemia (low blood sugar). This promotes discussion about how combining medications that decrease appetite (metformin), stimulate insulin secretion (glibenclamide) and suppress the symptoms of low blood sugar (propranolol) proved to be a nearly fatal combination in an elderly person.

Today's lecture on diabetes management went 35 minutes beyond the allotted time, mainly due to lively and practical comments from our Ugandan colleagues...innovative ways to store insulin without refrigeration, traditional dance as a form of exercise, and cost-effective approaches to diabetes treatment...Though given permission to leave at the scheduled ending time, most of the audience chose to stay. As the attendees mob us with questions afterwards, we are deeply moved by their motivation to learn and to provide the best care possible...

The creative expertise of the Graphic Arts Center at Einstein produced a first draft of the poster that we then carried to Uganda. Logan and I have completed detailed interviews of three key Ugandan diabetes providers, with several more to come. This is thrilling for me as they patiently give us feedback about word choices, drawings of faces, foods, etc—all things related to prevention and treatment of a low blood sugar. Here’s an example: we had a drawing of an apple in a segment about healthy snacks. Each interviewee said something like “Oh, that’s very nice, but only the rich can afford them.” (Lose the apple!)

This is truly a translation of the concepts into something that Ugandans will understand, and hopefully utilize, to decrease their morbidity and mortality from hypoglycemia. After several more interviews, we’ll move on to draft #2 back in the States and continue the feedback over the internet.

This morning, we received good news from India regarding two Ugandan patients with recent amputations. On previous ward rounds, I learned that the cost of artificial legs in Uganda, about $400, is prohibitive for most patients... So, our amputee patients were anticipating hobbling on crutches or being immobilized for the rest of their lives.

I remembered touring our partner institution in India, CMC Vellore, where artificial limbs ingeniously crafted from simple materials were provided to patients for a few dollars. My plea for help was answered immediately by our Indian colleague Nihal Thomas, who offered to provide a few custom-made limbs for our Ugandan diabetes patients, as well as to train a Ugandan technician in their methods. This epitomizes why we developed a collaboration with CMC Vellore... instead of introducing North American medicine into the developing world, we have much to learn from these colleagues about providing outstanding care in a resource-limited setting.

Josephine Ejang, diabetes nurse at Mulago and a good friend to Isaac, visited the school to make arrangements. We were excited that Parents' Day would coincide with our visit! However, our plans hit a roadblock when Josephine lost contact with Isaac. During school break, his grandmother was sent to hospital, leaving him alone.

Unable to reach Isaac by phone for two weeks, we decided to go find him. After Thursday's lectures, Josephine and I drove to the village named in his records. We arrived at the 'trading station' — a small clearing with a meager vegetable stall, surrounded by brick or mud-walled huts. Carrying our brochure with Isaac's photo, we headed on foot down a muddy path, trying not to slip on garbage and pig dirt. We encountered about a hundred people — bashfully smiling adults, excited children squealing "Hi Mzungu [white person]" — but no one recognized Isaac.

Back on the main road, we visited "Voice of Gayaza [region]", a loudspeaker on a short radio tower. For a dollar each, two booming announcements requested anyone with knowledge of Isaac to contact us. No one did. We returned to Kampala, rather discouraged.

But luck was with us, as Josephine learned of a second village with a nearly identical name, located five kilometers further down the road! We headed there this afternoon. The first person we met on the outskirts of this village smiled and pointed down the road when he saw Isaac's photo. A couple of hundred yards further, we found a mud-walled house surrounded by children... and standing in the doorway was Isaac! A kind relative had taken him in, but food was scarce.

Concerned about low blood sugars, Isaac had not taken insulin for a week — so we brought him to Mulago to stabilize his blood sugars before taking him back to school. Isaac's arrival on the diabetes ward causes some excitement. He is very familiar to the residents and nurses, who gather around to give him medical attention. Isaac's story is sufficiently heart-rending that these overburdened health professionals go the extra mile...

Part of me wants to fly home instead, missing loved ones and time to process all of the experiences. Experiences that need to be processed, experiences that are simultaneously draining and energizing (seemingly opposite emotions, I know, but this place is too rich not to ride the full spectrum).

Yesterday was particularly hard for me in that I met with a type 1 diabetic with whom I had gotten to know well the past few years. She was diagnosed at age three, and is now 29. After her mother died from HIV, this woman’s care was sporadic and inadequate in large part due to a lack of meds and diabetes supplies. In the last few years, she has had access to more treatments, and has become an amazing peer-educator. She has had numerous diabetes-related complications and is currently on hemodialysis awaiting a kidney transplant (would be done in India most likely).

The sad reality is that the transplant will not likely happen, in part because of immediate expense but even more so that her follow-up and treatment in Uganda would be very limited. No meds, no post-transplant treatment center, no to little chance at success. She has been canvassing families, friends, and organizations for donations toward the operation. I sat with her for over two hours, discussing her treatment, discussing the reality of her situation. Astonishingly, she regarded me with peaceful eyes, eyes that saw the reality of the situation without anger or sadness. I said good-bye, wondering if I would ever see her again. I watched her walk away with a knot in my heart. Again, motivation to help make changes here.

The quote above…I think this quote is at the heart of what inspires us: He’s just a boy.

Isaac is hospitalized to stabilize his high blood sugar and figure out the source of his cough and weakness. He has a bed at the end of the ward hallway — a little corner to himself, except for other patients’ family members sitting on the floor. Problems with his care include not yet getting important tests done, including a sputum sample and a Chest X-ray. Why are his blood sugars high again? Why is he anemic? (To do many of these tests, patients must first figure out payment. Nurse Josephine is reluctant to use our funds, since simple tests should be free for disadvantaged patients. Meanwhile, the tests need to somehow get done...)

Food availability in the hospital is an issue as well; patients need money to purchase food other than the one meal a day provided in the hospital. In Isaac’s case, the nurses always collected money to feed him during past stays, and this time our team is eager to step up to the plate. His first night in hospital, I tried to be helpful by bringing him my available American food from our guest house. While he did munch on my Luna bars (9 grams of protein), he rejected my vacuum-packed tuna and salmon. He’d definitely prefer the comfort of Ugandan foods! Tomorrow marks the final day here for Logan and me, and it’s hard to discern how to help. For now, we’re trying to do as much as we can for Isaac and the kind staff caring for him… trusting that, in the process, we will learn more about sustaining the precarious lives of children with diabetes in Uganda.

UPDATE: We are deeply saddened to report that, since the writing of these posts, Isaac has passed away.