Although the complex care evidence base continues to grow, meaningful involvement of people with complex needs in the research process is lacking. Patients are often not involved in the development of research questions, protocols, and measures, and as a result, researchers often measure “success” as it is defined for health systems and health plans, typically based on reduced utilization and costs.
Through support from the Patient-Centered Outcomes Research Institute, the Center for Health Care Strategies (CHCS) published a Patient-Centered Complex Care Research Agenda to help move the field closer to meaningfully involving people with lived experience of complex care in the research process.
The Better Care Playbook spoke to two individuals who helped develop the Research Agenda — Hemal Kanzaria, MD, Associate Professor of Emergency Medicine at University of California San Francisco and LaKeesha Dumas, a social justice, community, and behavioral health advocate and founder of None Left Behind — to learn more about how involving people with lived experience in research can help strengthen the complex care evidence base.
How does having patients and communities involved in all stages of research improve the processes and outcomes of complex care quality improvement work?
L. Dumas: Patients are the experts in their own communities and their own care, which would in turn improve research processes and outcomes.
Patient and community-partnered research ends up being richer, more joyous, more lasting, and more meaningful.
H. Kanzaria: From the research partner perspective, patient and community-partnered research ends up being richer, more joyous, more lasting, and more meaningful. We're doing this work with the intention of improving health for our community, and having the community and patients guide the work is so powerful.
One example of this type of research is community-based participatory research (CBPR). It's a well-known model, but most research is not conducted in that manner. The goal of CBPR is to provide benefit and meaning for the community that you're trying to help serve, to co-create and co-direct alongside them, and to leave a legacy for science for everyone. It’s key to ensure that patients and community members drive what's important and acceptable, and also have the space to ask and learn what is important.
What does meaningfully engaging patients in research look like, beyond patient satisfaction and patient care surveys?
Sometimes we can't fix everything, but knowing that you're heard and understood is number one, and that's a gateway to trust.
L. Dumas: Involving patients from the beginning of the process, not just with a stipend, but really partnering with them to help with the research. I think it's a blueprint for systems to adapt to, to really see patients as experts, and not bring them in as an afterthought. With lived experience, patients know firsthand what's needed and want to know that they're being heard. Putting that at the top of the list of satisfaction — were you heard? Were you understood? Sometimes we can't fix everything, but knowing that you're heard and understood is number one, and that's a gateway to trust.
H. Kanzaria: Thinking about the whole life cycle of the research process, it's partnership and co-creation at every stage. That means — project co-conception, working on grants, executing the research idea, doing the work, and then publishing and disseminating — all together. The partners are working together in every one of those steps and recognizing the skill set that everyone's bringing to it. That makes the work better than anyone could do by themselves.
What meaningfully involving patients looks like to me is focusing on trust, partnership, and transparency. It’s about recognizing that people with lived experience have a strong knowledge base and a desired skill set that is different than mine, as a clinician or a researcher.
What does it look like to really have that patient-centered research shape care?
L. Dumas: Having patients engage in the research process is like a bridge between the systems and the community. Patients are leading what the outcomes look like for them, not what is prescribed to them. They're telling you what their needs are. If this is patient led, it's more of a bridge from the community to the health care systems, and the communities have those folks that they trust. Trust is a big thing, and so if you are honoring those patient leaders on your team, it looks really good for the community that the research is honoring them. Trust them, then it's a better segue to partnership.
What are the main obstacles for pursuing patient-centered research, and what is needed to address these challenges?
L. Dumas: One obstacle is over-surveying when the data are already there. It seems like the research always starts at the beginning, every time a different researcher comes into the picture. Researchers should gather the information that has been previously provided and use that as a starting point.
H. Kanzaria: Health care has historically not done a good job in deserving community trust. The focus needs to be on trust and partnership. Nothing can come without that. Some of the obstacles are the research timeline and what is incentivized often doesn't correlate well with doing really partnered work. For example, historically with research, there's the individual principal investigator, the person whose name is on the grant, who gets the award, and that model does not acknowledge partners in the work, or that research is almost always done as a team. Unless you have trust built up beforehand, it doesn't work to go to a patient representative or a community panel or community members and say, here's the idea that this funding agency is interested in.
Just putting your paper in some journal is not sufficient dissemination ... Forums to share what was learned with the community to see what can be done is a much stronger way to disseminate your work and make an impact and continue to build trust.
Really understanding what the priorities of your community partners are and what is valued by them is critical to support patient-centered research. People also talk a lot about how there's not enough time to do partnered work, but actually partnering with the community could make things more efficient. For example, in terms of dissemination, just putting your paper in some journal is not sufficient dissemination. Thinking about having community forums to share what was learned with the community to see what can be done is a much stronger way to disseminate your work and make an impact and continue to build trust. This benefits everyone down the road, but you need to do the work upfront.
What is one takeaway from the Research Agenda that you think is important for complex care stakeholders to understand?
L. Dumas: Partner from the beginning — that is the biggest takeaway.
H. Kanzaria: Allow patients to be the voice guiding the research and guiding the work. A big takeaway from the Research Agenda is how we have historically focused on cost and utilization reductions without even getting a sense if that matters to patients. Instead, we need to think about what outcomes matter to patients. We may hear different things — whether that is quality of life, the experience of a fragmented system, or emphasis on equity-based measures — things that haven’t previously been lifted up as clearly.
The Research Agenda development process itself brought together stakeholders from a range of areas and elevated partners throughout the process. I think some great themes came out of it that we can use to hopefully move this work forward and do that in a way that benefits patients and community members.
What is one piece of advice you would give researchers or program leaders about how to support a patient-centered approach to evaluating and ultimately improving complex care programs?
H. Kanzaria: It's important to create a safe environment where we can have honest discussions and recognize people are likely going to come from different perspectives. But we need to put things on the table transparently, share data, and share how it can be used. Continue to ask what outcomes and topics are important to the community and letting that drive the work – what would success look like in one year or three years to your community partners? I would emphasize bringing on individuals with lived experience, bringing on peer navigators, and compensating people appropriately for their time.
Do some historical research — know the barriers and challenges that [communities] have already faced. So, when you approach this research, it's not doing further harm.
L. Dumas: Get to know your audience. Get to know your patients. Get to know your community. Get to know your patient base. Do some historical research — know the barriers and challenges that they have already faced. So, when you approach this research, it's not doing further harm. It's taking a different pathway to really benefit and show something different for the communities.