A New Direction for Patient Engagement: Upstream

When I heard Rana Awdish and Tiffany Christensen address the crowd, I sensed right away that something was different about their stories of sickness and health. Both Rana and Tiffany had found themselves approaching death on a hospital bed. One faced sudden, unexpected critical illness, and one faced chronic disease and a failing body. Both women needed to lean on friends and family more than they ever imagined they would. But then, they got better. And their families got better, too. Rana and Tiffany found systems to support them in their own communities, so that they and their families could carry on, straining but not breaking.


Hidden between the lines of these stories, I thought, was a strategy worth replicating.

The two women told their stories in December at the IHI National Forum, a convening of thousands of people passionate about improving the quality of health care worldwide. IHI President Derek Feeley kicked off the conference with a conversation with Rana and Tiffany, each of whom described a key ingredient in her healing: the ability to advocate for her own wellbeing — and her caregivers’ willingness to listen.


Patient engagement has become an increasingly mainstream part of the conversation when looking for ways to advance the quadruple aim — better outcomes, improved patient experience, lower costs, and more joy and meaning at work — and rightly so. But as Rana’s and Tiffany’s stories illustrated, the strides made in patient engagement most often occur at the bedside, when the patient is already sick. While we’re doing better than we have in the past, we must do better still.


Later that same day, Bryan Stevenson, a lawyer and social-justice advocate, spoke of his experience defending those whom the system has failed. He told the story of a scared 14-year-old black boy tried for capital murder as an adult for defending his abused mother. Stevenson made it radically apparent that racial disparities are still shamefully present in society today. However, he did not speak from a position of defeat or anger, but one of hope.


Stevenson outlined a clear solution to addressing these disparities in society: proximity. Get past our assumptions, get into real communities, and understand the needs of individuals based on where they live, work, and play. In the context of the IHI National Forum, Stevenson seemed to be asking us: Is the healthcare system failing our patients by remaining too removed from their lives, by waiting until they are laying in the hospital bed to engage them in their own care?


This boy had an advocate and a partner in Stevenson, who ultimately had his case transferred to juvenile court. Stevenson was able to serve his young client well because he intimately understood his everyday world. In health care, we can be that partner for our patients.


That’s when the pieces clicked together, and I saw clearly a more evolved definition of what it means to meaningfully engage patients. We need to engage and empower patients before they reach the hospital to minimize their risk of getting there in the first place. To truly achieve meaningful patient engagement and high-quality care, it is necessary not only to engage patients to better address their biological needs, but to address their social needs, as well. In other words, patient engagement needs to move upstream.


How? In practice, there are a number of things that healthcare providers and organizations can do to incorporate this idea of Upstream Patient Engagement, by building on the lessons learned from the bedside. For example:


  • As we redesign our practice to address social determinants of health, ask for the patient’s and family members’ perspectives. We must validate our assumptions about what problems our patients and families are facing to discover what would be most meaningful to them.
  • Tap into the knowledge of community-based organizations and individuals with lived experience. Many organizations are partnering with CBOs or employing Community Health Workers, who often have personal connections with the patients and communities they interact with, to inform policies and priorities to ensure that they positively impact the lives of those they serve.​
  • When we screen our patients for health-related social needs, ask about patients’ preferences for how to address them. Accounting for cultural, religious, or personal preferences can significantly increase the likelihood that the patient will make the necessary connections to helpful services. In Latino culture, for example, refusing food can be seen as a sign of disrespect, so it is difficult to control food choices at family celebrations. Referral to services should be an informed, not an automated, process.

​The IHI Forum featured many fantastic sessions on advancing health equity, population health, and patient and family engagement, all of which were inspiring in their own right. However, I left with a desire to see all these conversations merge — to expand the definition of meaningful engagement.


I believe this idea is not only hypothetical, but doable, as well — and necessary to achieve the advancement of the quadruple aim. Change like this doesn’t need to be difficult; it always starts with a first step. What will your first step be?

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