The global health community has made remarkable strides in improving access to services. The cost of vital commodities such as HIV treatment, insecticide-treated bed nets, and basic immunizations has dropped, their availability in remote areas has expanded, and clinical effectiveness has strengthened. Yet gaps remain between the availability of these services and effective use among patients. HIV treatment, for example, is only effective in controlling the infection and preventing transmission if taken consistently every day—a goal that only about three-quarters of patients achieve. These types of behavioral barriers detract from progress in ensuring that the full impact of medical advancements reaches the people that could most benefit.
Top-down technology solutions and rigid program-operating models cannot solve subtler behavioral gaps. Instead, smaller facets of the patient experience determine how effectively patients will engage with public health services. Once proof-of-concept for a model is established, there are huge advantages to leveraging interdisciplinary tools—such as those available from design thinking, behavioral science, and evaluation—to optimize “around the edges” to maximize effectiveness for each population programs aim to serve. The impact of using HIV treatment as a prevention tactic, for instance, depends not only on the clinical effectiveness of the medication, but also the contextual and behavioral barriers at play.
Understanding the patients behind the diagnosis
Consider the experience of two patients living with HIV in a rural area of Tanzania, Fatima and Esther (names changed to protect patient privacy). Both were diagnosed late in life, after they had adult children and were living independently, tending their own plots of land. Fatima’s children accompanied her to the clinic every month, reminded her to take medications, and insisted that she stop farming and move in with one of them until she regained her strength. Throughout the initial stages of her treatment, she received love and encouragement.
Esther was also part of a close-knit community, but she felt she could not reveal her HIV status due to the risk of stigma. She planned to attend appointments and stay on the prescribed treatment, but it was difficult to manage on her own. She had to miss farm work for each visit to the clinic and concealed her medications at home. She chose a clinic four hours from her home, both for its reputation of trustworthy staff and its distance—it was unlikely that anyone would recognize her there. Esther was forced to overcome a series of barriers, some physical and others emotional, to maintain her treatment. Every extra minute spent waiting alone at the clinic, every frustrated slight from a harried provider, and every white lie she told to maintain her privacy weighed on her. The sum of these barriers compounded stress, making it tempting to skip or delay appointments.
Both women hoped to become healthy and wanted to feel productive. But although Tanzania has a strong system in place to diagnose and dispense treatment to people living with HIV, the differences in their experiences may contribute to vastly different outcomes. Many patients face similar or more significant challenges in navigating their health conditions, and in fact more than a third of people living with HIV in Africa fall out of the HIV care system within the first few years of beginning treatment.
Using interdisciplinary tools to improve patient experiences
While program designers cannot easily change a patient’s economic circumstances or family life, we can work to optimize services to nudge the experience of those like Esther closer to Fatima’s. Using a “watch-listen-map-brainstorm” formative process we developed, we focused on understanding the patient experience of people living with HIV in rural Tanzania. We used ethnographic methods borrowed from design thinking and marketing research, and engaged patients to help prototype and rapidly test innovations that leveraged the insights learned from connecting to the context, hopes, and realities of their day-to-day lives.
The solution that emerged relied on two connected interventions, an in-clinic and a take-home component tied together by a social message incorporating the Baobab tree—a tree with strong local associations to good health and community. The Baobab image quietly appeared on all the program materials, in part to remind patients of wellbeing and community support. Both interventions built on behaviors that were natural to patients or connected to needs identified from mapping their experiences.
For example, a typical provider in the town of Shinyanga won’t address the doubts of someone like Ester, who worries whether she’ll be strong enough to maintain her farm, and lend her time and support to her extended family. Sometimes patients even fear clinicians will scold them for not following treatment guidelines or missing appointments. To soften the provider-patient relationship, we tested an in-clinic intervention that introduced moments of praise and delight, and disrupted the norm of limited formal interactions. If a patient successfully attended three appointments in a row, then health staff publicly praised them and encouraged them to place a sticker on a prominent display so that the visual on the display grew over time. The materials influenced patient motivations for returning, and visually showed patients that staying in care is not an extraordinary feat, but one that many of their peers find ways to achieve.
The second element of the solution was a tool that patients could use at home. Patients either received a pillbox with the dimensions of a mobile phone that could disguise their medications or a calendar featuring images of normal daily life that patients aspired to return to upon achieving better health. The design drew from the Baobab tree and in-clinic displays so that patients would have a reminder of the support system available to them at the clinic. This emerged as a strategy in the formative phase, as patients turned to one another during visits for advice and guidance, but often avoided discussing their health at home.
After testing these tools over six months with more than 1,000 patients (more about our statistical methods here), we found they helped people take steps to improve their health. By rewarding patients with praise, the program encouraged them not to skip or delay their visits. After 6 months, 87 percent of patients exposed to our solution were still in care, compared to 79 percent of patients who received normal care. These appointments are the only opportunity providers have to monitor wellbeing and provide life-sustaining medications.
We believe these changes are rooted in the program’s formative approach and the power of focusing on the patient experience. Patients agreed that the solutions improved clinic life. After the solution was implemented, patients were more likely to feel supported by clinicians and their fellow patients. Overall, the percentage of patients who felt very satisfied with the clinics rose from 35 percent to 53 percent.
Our next step will be a rigorous test of our process through a larger randomized control trial.
Small steps to do better by patients
Patients face far more significant challenges than the difficulties we had to overcome, such as raising funds and aligning partners to do this work. It’s up to those implementing health programs to overcome these obstacles to optimize and test innovations to ensure that solutions are not only clever, but also impactful and account for behavioral barriers in each context in which they are applied. While we haven’t solved the adherence challenge, we hope that through testing on the edges of Tanzania’s comprehensive HIV treatment model, we can help patients like Esther while gaining insights about what may work for other health objectives within the system or in other areas.
Many champion user-focused approaches such as design thinking as a source of the next “big” thing, whether it’s a cutting edge consumer technology or service experience for a Fortune 500. We are optimistic that it can also garner a wave of smaller innovations in global health by complementing tools such as behavioral science and rigorous evaluation from other disciplines. Such innovations can improve public health service at the edges, and move patients from being the beneficiary or “target” of an intervention to the stakeholder whose opinion, behavior, and experiences matters most. Taking this mindset of developing a clinically effective core model, then continuously testing and adapting it to a patient’s experience isn’t suited only to profit-minded companies with the capability to marshal large resources, but also to remote clinics and policymakers invested in driving health outcomes through small but ultimately powerful innovations.