Patient, caregiver and community (PCC) engagement is a key ingredient in learning health systems to improve healthcare service delivery and ultimately health outcomes. “Positioning Patients to Partner,” a recently published commentary led by Dr. Nakia Lee Foon, Institute for Better Health (IBH) Health Equity Research Lead, found that while many systems are working to include PCCs in helping to improve healthcare services, for the most part, involvement is limited, incomplete or missed altogether.

Two of the authors – Dr. Lee-Foon and Maureen Smith, patient partner – spoke about the commentary and why it’s important to rethink how we approach PCC engagement in learning health systems.

IBH: Tell us about your recently published commentary “Positioning Patients to Partner.”

Dr. Nakia Lee-Foon: This commentary delves into the current state of patient, caregiver and community involvement in the learning health system (LHS) and provides readers with suggestions on ways to ensure these individuals are active participants in every step of the LHS. It was written in with a patient partner (Maureen Smith) and public health, patient and caregiver, community-based research scholars. It highlights many of the ways the LHS’s calls for continued and deeper patient, caregiver and community involvement have not yet been answered.

Maureen Smith: I have been involved in patient engagement in health policy and healthcare research for more than twenty years now. In the past five years, it has become more common for patient partners to be co-authors when the findings of the studies in which they have been involved are published or commentaries such as this one are penned. I particularly enjoy this aspect of the work as I can provide my perspective on how patient engagement is framed and reported. For this commentary, I was involved from the initial drafting stage, contributing to how it was shaped and providing my perspective as a person who has a great deal of experience in patient-partnered research.

Define patient, caregiver and community partnerships in healthcare, in your own words. 

Smith: That’s a good question as there are many definitions! For me, patient and community partnership in healthcare occurs when patients, caregivers, communities or citizens are actively engaged in healthcare as partners. This could be in various steps of the research process, such as prioritizing research questions, or in serving on policy committees, healthcare governance or other decision-making bodies. The work is carried out “with us” and not on behalf of us.  You’ll often hear: “Nothing about us, without us.” That pretty much sums it up.

With this in mind, what are some ways we can build trust within learning health systems, specifically for equity-deserving groups?

Smith: One way to build trust is for the researchers who lead these learning health systems projects to put all their cards on the table. These are new ideas and new ways of working where everyone is learning together. It’s one step at a time, and sometimes we get it wrong, but we learn from our errors and keep improving. The real trust-building occurs from the onset of engagement and takes time. Learning health systems must be willing to invest the time and resources to engage with equity-deserving groups and then conduct robust evaluation of the process and the impact to continually improve. Most importantly, I think it’s about listening to how equity-deserving groups want to be involved and adapting the engagement methods to respond to their needs.

Dr. Lee-Foon: The LHS’s positioning of patients, caregivers and communities’ involvement as vital components of well-functioning and effective health systems offers an excellent starting point to begin building trust with healthcare users. Some of the ways we can build trust with the LHS, specifically with those from equity-deserving groups are:

  1. Engaging in transparent and ongoing conversations about the health system and potential health system improvement initiatives;
  2. Engaging groups in robust and critical conversations about the system and providing commitments to addressing any critical feedback;
  3. Providing space for those who are often silenced in health systems, propelling their voices to the forefront, enabling them to take up space and direct health system initiatives;
  4. Viewing lived experiences as important and integral to shaping system initiatives; and
  5. Actively work with community stakeholders and organizations to recruit individuals who may not consistently access health services for various reasons (e.g., access, language barriers, racism, sexism).

Why is ongoing investigation in this area important? 

Dr. Lee-Foon: As the LHS continues gaining more traction with health systems around the world, ensuring patients, communities and caregivers are engaged at the very start of any LHS initiatives and are active and ongoing partners in health system change is vital to enhancing health systems that are responsive to and reflective of patients’ needs. A responsive and flexible system informed by user experiences is particularly important in the current healthcare landscape where patient dissatisfaction, clinician burnout and funding disparities are at all-time highs.

Tell us about some of the key ways forward? What can health researchers enact now to ensure deeper, ongoing engagement with patients, caregivers and communities?

Dr. Lee-Foon: We end the commentary by offering some ways to help readers enhance this engagement in their respective LHS. These ways revolve around examining: 1) the use of collected data, and how it is used to inform patient care; and 2) how and at what level patients, caregivers and communities are participating in learning activities of, for example, the health system’s improvement initiatives. It is imperative that we maintain individuals’ trust of health systems, particularly those from equity-deserving groups, through transparency and explicit awareness of their work’s impact on healthcare systems.

Smith: There must be greater understanding of what engagement with patients, caregivers, and communities looks like in learning health systems. In theory, it’s a concept that I’d dare to say most patients will embrace – learning and improving without years of waiting for changes and better outcomes. The fundamental question for people like me, the end users of the learning health system, is from whom are we learning? This must include the perspectives of everyone involved: patients, caregivers, communities, clinicians, and policy and decision makers. Everyone is part of the solution, and health researchers already have much experience in bringing people together. Filling out an occasional survey is not the answer. It’s about co-design and co-production. There is much good work happening in this field, but we are not doing enough on two fronts: highlighting examples of successful partnerships and working together to continually learn and evolve. Patients, caregivers, and communities need concrete examples of how a learning health system project engages them and what it can achieve. Otherwise, it just sounds like another great idea with impressive slogans, diagrams, and promises.

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