Designing for Health

Wrapping your arms around healthcare as an industry and a service can be frustrating. It's also universal—nearly all of us have had a patient or caregiver experience that exposes the fragmentation, complexity, and non-user-friendliness of standard medical care.

One of the biggest and most fundamental challenges of our existing healthcare system is that it is set up to treat you when you’re sick, not promote health or prevent patients from getting sick in the first place. Our health is much more dependent on what happens outside of the clinic walls in our day-to-day lives and communities than any prescription or diagnostic test. The "social determinants of health," things such as job stability or access to healthy and nutritious food, have 9 times greater of an impact on health outcomes than clinical care. And yet, we don't define, deliver, or pay for for healthcare along those lines.

Our health is much more dependent on what happens outside of the clinic walls in our day-to-day lives and communities than any prescription or diagnostic test. 

Over the past 12 years, I've seen this issue from a number of different angles—first as a student advocate working directly with patients in a busy pediatrics clinic in East Baltimore, then as part of an organization leading a national movement around addressing patients' basic needs (housing, food insecurity), and most recently at the Baltimore City Health Department, on a team supporting a city-wide approach to addressing social determinants.

And in that time, I've seen significant momentum around recognizing social determinants as key ingredients for good health—in 2016, the Centers for Medicaid and Medicare Innovation (CMMI) announced Accountable Health Communities, a $157 million fund for institutions that are addressing patients' social needs at scale. Awards were granted to 32 demonstration sites, each of which will screen up to 75,000 Medicaid and Medicare beneficiaries and then direct them to the community resources that will address their needs, via technology solutions such as developing a city-wide database of those resources and workforce solutions such as deploying community health workers who can build long-lasting patient relationships. In the past two years, the number of tech vendors focused on the social determinants of health has increased dramatically, and health systems are increasingly naming this work as part of their core strategy.

How do we leverage technology to support this transformation from a medical care system to one that promotes health and well-being?

Encouraging as these developments are, however, they also raise new questions. As a Public Interest Technology Fellow, I’ve been particularly obsessed with this one: How do we leverage technology to support this transformation from a medical care system to one that promotes health and well-being?

On May 11th, practitioners from across the Mid-Atlantic region gathered at New America to explore this question in depth. With representatives from local health departments, nonprofit organizations, federally qualified health centers, social service providers, technology vendors, and large health systems, together we explored what it would look like to move beyond "social determinants of health" as a buzzword, and instead adopt it as a comprehensive strategy.

Three key themes came up. First, it's impossible to design a new health system and the technology that comes with it without the real end-users in the room. "Patient-centered" is a term that gets thrown around often in healthcare, but when you’re talking about designing a screening tool to understand a patient’s housing situation or risk for interpersonal violence, the voice of that patient is crucial. As communities and healthcare stakeholders pursue this work, we need to think about how to move beyond one-time focus groups or occasional surveys to instead integrating patients into the decision-making process as subject matter experts in their own lives and communities. By soliciting direct user feedback, designers and practitioners can help limit the unintended negative consequences of new technology, as well as ensuring its usability and efficiency.

By soliciting direct user feedback, designers and practitioners can help limit the unintended negative consequences of new technology, as well as ensuring its usability and efficiency.

Second, as we move towards a more integrated view of what health looks like, we also have to exercise caution. A unified window for practitioners that shows both the healthcare and social services accessed by a patient sounds helpful in theory. But what does this mean for patient privacy, consent, and confidentiality? As we grapple with the use of individuals’ data across multiple sectors and use cases, how do we balance usefulness with patient preferences? While there are no straightforward answers, two places to start include implementing straightforward was for patients to give consent around who has access to specific types of their data -- and then ensuring transparency around who is actually accessing it.

And finally, how do we think about the other side of the equation—the community organizations, social services providers, and others who are providing services essential for good health but who aren’t seen as current fixtures of the healthcare system? Facilitating connections between the healthcare system and these stakeholders is predicated on first building a technology workflow and infrastructure that makes sense -- a small food pantry, for example, may not have the capacity or the systems to receive an electronic referral from a clinic and then track whether the patient has actually obtained food. So for this to work, we also need to understand the social services technology infrastructure and invest in expanding it and modernizing it.

The movement towards patient health (rather than sickcare) is an exciting one.

Even given these considerations, the movement towards patient health (rather than sickcare) is an exciting one. Redesigning our healthcare system requires every tool at our disposal—and technology, with its ability to streamline processes, surface the right data at the right time, and link together disparate organizations, is an essential one. Building a great health system requires intentionality and engagement, and soliciting user feedback from patients, community providers, medical professionals—from all of us—on what this new future could look like is a key place to start.