Patient perspectives should be incorporated into every aspect of complex care, including research efforts, to assess program effectiveness and build a rigorous evidence base. Meaningfully involving patients in designing and conducting research and evaluation can ensure that programs and the field at large prioritize what is most important to the people they serve.

With these factors in mind, and with support from the Patient-Centered Outcomes Research Institute, the Center for Health Care Strategies brought together a range of stakeholders — patients, providers, researchers, and clinicians — to develop a Patient-Centered Complex Care Research Agenda. The proposed Research Agenda, which will be unveiled in Fall 2022, aims to embed a consistent focus on what matters most to patients into complex care research design.

To involve people with lived expertise in informing the development of the Research Agenda, we collaborated with Patient and Family Centered Care Partners (PFCCpartners) to create a Patient and Family Advisory Board (PFAB). In recruiting for what was originally proposed to be a five-member Board, we received over 40 applications. This overwhelming interest led us to expand the Board to eight members and create a Research Community of additional people with lived expertise who would be able to participate in project activities. Both the PFAB and the Research Community include people with complex health care needs (including medical, mental health and/or substance use conditions) and social needs (e.g., housing, food access, and transportation). We engaged the PFAB and Research Community throughout the development of the Research Agenda, including standalone and joint meetings with other subject matter experts.

Ten months and many meetings later, we have learned so much about how to effectively engage patients in efforts like these. Following are insights we gained from working with our committed patient partners to develop the Research Agenda. The lessons can help inform other organizations seeking to meaningfully include patient perspectives to guide research priorities.

Practical Lessons on Involving Patients to Guide Complex Care Research

1. Go beyond your usual network to recruit people with lived expertise

We have been moved by the amount of interest and passion people with lived expertise have had in supporting the development of the Patient-Centered Complex Care Research Agenda. While we circulated the application among our own networks, potential applicants also shared it with their networks and spread the news by word of mouth. As a result, we received applications from across the country and among previously untapped patient-advocacy networks. We view this as a strong signal that patients are eager to lend their experience and voices to improve approaches to care.

2. Engage early, often, and intentionally  

With guidance from PFCCpartners, we engaged the PFAB and Research Community throughout the project from co-designing project activities, meeting agendas, and objectives to implementing a collective vision for what will be included in the Research Agenda. We communicated with the PFAB and Research Community regularly but sought to avoid over-communicating or over-complicating opportunities to participate in project tasks. We streamlined communication through a single point of contact and email distribution list, bundled requests to avoid multiple outreaches, and responded swiftly to questions and feedback. Having a consistent communication strategy enabled us to build trust and develop relationships with the PFAB and Research Community.

3. Avoid siloing people with lived expertise  

Prior to engaging in project activities, members of the PFAB and Research Community voiced their strong preference to be included alongside other project participants, including researchers, providers, and other health care leaders. They wanted to avoid being siloed or “tokenized” or give their opinions in a “patient only” way. To align with this value, we included the PFAB and Research Community alongside other project participants in every activity. No one had to self-identify, and the PFAB and Research Community were included as subject matter experts in conjunction with the rest of the project participants. Before each large project convening, PFCCpartners hosted orientation sessions for the PFAB and Research Community to support participation and answer any questions.

4. Communicate accessibly

CHCS partnered with PFCCpartners on the application process with a focus on ensuring meaningful patient engagement. For starters, we streamlined the process to make applying accessible and straightforward. People could apply via email or verbally walk through the application questions with someone who would take notes — which enabled people without access to computers or smartphones the opportunity to apply. From the outset, it was important to build trust by ensuring a smooth application process with clear information about how people could stay informed. In addition, we offered compensation for PFAB members to make it clear that we valued their time and expertise.

Early on, participants overwhelmingly requested we communicate in a more accessible way by avoiding jargon and acronyms. We employed a host of strategies to address this challenge and make our materials more accessible. In some instances, members of the PFAB and Research Community offered to revise our project materials to eliminate complexity and jargon and reshare the materials with the rest of the group. We are currently working with PFAB members to ensure the language in the Research Agenda is more accessible to a wide variety of audiences.

We created a Glossary of Terms that we disseminated prior to meetings or alongside materials. We also developed videos to explain certain complex research concepts and disseminated these videos prior to meetings to help participants feel more confident about the topics to be discussed.

We learned that since not all PFAB and Research Community members had consistent computer access, some could not use online collaboration tools such as Jamboard. We used several strategies to address these barriers, including sending written materials ahead of time and accepting feedback in multiple formats. For example, people participating in the meeting would offer their feedback verbally and a notetaker would transcribe their contributions into the online platform we used.

5. Be flexible

One of the biggest takeaways from centering patient perspectives throughout the project was to be responsive and adapt our project in real time. This required us to be flexible with project activities and collaborate with PFAB and Research Community members to determine how and what methods to use to ensure the highest level of active participation.

We regularly asked the PFAB and Research Community to evaluate how we were doing to let us know what was working and what wasn’t, enabling us to adapt and refine our processes throughout the project. For example, we learned that the timeframe we originally asked PFAB members to review material within was too short and, in response, we added additional time for review. We listened to negative feedback openly and used this as an opportunity to evaluate our assumptions and improve our approach and interactions.

Moving Forward

As we increasingly look to engage consumer and community voice into all aspects of our work to improve health outcomes and advance health equity, these insights are applicable to many other initiatives. We found that we were able to establish trusting relationships with our patient partners by communicating effectively and being open to refining our methods. This required new skill-building for our team members and additional investments of time and resources, but it is abundantly clear to us that the payoff is well worth the effort.

Research reported in this blog post was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (20920). The views presented in this blog post are solely the responsibility of the author and do not necessarily represent the views of PCORI, its Board of Governors or Methodology Committee.
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

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