My work at AcademyHealth examines ways to engage patients and other stakeholders in health research, policy, and practice contexts. This includes studying the value and impact of ethical, effective, and intentional stakeholder engagement in patient-centered outcomes research and comparative effectiveness research. Approaching AcademyHealth’s Annual Research Meeting (ARM) through this frame of reference, I was eager to see how concepts and practices associated with "patient-centeredness" would figure into the broader community discourse – to get a sense of whether the research community is truly poised to align with the growing recognition that patient perspectives matter.
Throughout the meeting, I found myself excited and encouraged by emergent themes and comments. Several particularly notable moments suggested that patient-centered approaches will continue to feature, significantly and sustainably, as the field of health services research (HSR) advances.
Best Practice for True Partnership
Supported in part by the Patient-Centered Outcomes Research Institute (PCORI), a session entitled "Sustaining Partnerships for Patient-Centered Outcomes Research" featured a diverse panel comprised of PCORI representatives alongside patient and researcher partners. Session tone and content fully reflected PCORI's commitment to support research that simultaneously retains methodological rigor - and remains responsive to patient partners' or participants' goals, needs, preferences, and values.
Notably, this session elucidated some of the PCORI-implemented policies and practices that serve as industry standards, against which other researchers and funders can assess their own engagement activities. PCORI's Courtney Clyatt discussed her experience working with Pipeline to Proposal (P2P) awardees – whose multi-stakeholder teams receive tiered awards based on the maturation of their partnerships, project plans, and prepared proposals. Lia Hotchkiss noted that stakeholders involved in PCORI’s Engagement Award activities have opportunities to develop new research skills; they’re further empowered to pursue additional, novel applications of these skills, even once projects end. Finally, Julie Kennedy Lesch discussed the value of particular best practices for engagement including maintaining reciprocal relationships, clarifying individuals’ roles, and demonstrating intentionality with regard to the way stakeholder input will be reflected in the project plan or work.
For researchers in the room, the presentation offered a healthy introduction to PCORI's approach: one that I expect will increasingly serve as a model for others, as the value and impact of patient-centered research continues to be documented. The direct benefits of this approach were echoed by Dr. Danielle LaVallee and Janice Tufte – whose comments provided strong support for intentionally integrating teams and involving patients, practitioners, and other partners throughout the full course of research activities. Additionally, speakers’ remarks echoed the importance of learning to “strategize for sustainability” and align teams via activities to build trust, avoid jargon, and acknowledge diverse kinds of expertise. Finally, PCORI's Director of Public and Patient Engagement (Dr. Kristin Carman) supported a robust discussion that effectively engaged diverse “corners” of the attending audience – ensuring that thematic takeaways were truly reflective of (and responsive to) the priorities of different stakeholders.
Methods for Meaningful & Responsive Research
As a research-oriented convening, ARM featured multiple sessions and workshops focused on the evidence-based methods shaping the trajectory of HSR. Several of these specifically explored adaptive and innovative patient-centered approaches to research planning, conduct, and dissemination.
One workshop, supported by AcademyHealth in partnership with Quantified Health, focused on the growing area of single subject research. This discipline (often referred to as N-of-1 research) utilizes non-traditional study designs, in order to examine and respond to the "case" of one particular patient or participant. These approaches are particularly conducive to addressing research questions that can be difficult to study via traditional research methods (which typically necessitate large and diversified samples to produce generalizable results).
During the workshop, participants referenced the reality that evidence produced by randomized controlled trials (RCTs) does not always translate in ways that can directly inform care or improve health outcomes for an individual patient. The findings from N-of-1 studies, conversely, can be directly leveraged to inform evidence-based medical practice and address the needs of individual patients.
Workshop participants acknowledged barriers to conducting these special types of research; related study and intervention designs are often individually tailored, which prevents the creation of "economies of scale" afforded by larger studies. That said, this emergent field is increasingly celebrated – given its parallels with growing movements in favor of consumer engagement in health care, patient/participant engagement in health research, and use of patient-generated health data in numerous contexts.
As the field matures, N-of-1 research is generating a new and valuable evidence-base that directly addresses needs, interests, and priority research questions identified by patients and providers; however, infrastructure for review and dissemination of this research is needed to ensure its recognition as both a viable and valid source of information. Session hosts actively created a space to support and strengthen work in this area, by bringing traditional clinical and public health research communities into closer contact with N-of-1 research methods and practitioners.
Another session, "Methods to Enhance Patient-Centered Outcomes Research and Communication," focused on approaches to both eliciting and incorporating patient and stakeholder perspectives in health care research design and implementation processes. Several panelists described the creation of PCORI's Methodology Guidance and Standards, which occurred via an iterative and responsive process that generated more than 1,500 individual comments from various stakeholders.
Other presenters introduced novel methods for understanding patients' or clinicians' perspectives, using social media platforms and discussion forums. Presenting on the use of the Video Reflexive Ethnography (VRE) method, to capture communication between health care providers, Dr. Milisa Manojlovich referenced a thought-provoking quotation: "To restore balance between the art and the science of medicine, we should…[make] room for training in communication, interpersonal dynamics & leadership."
She had sourced it from a recent New York Times opinion piece, which offered commentary on the need for "humanistic" or "human-centered" healing. Beyond its original context, the quotation reflects the role of HSR as a significant cog in any proposed strategy for inducing systemic and sustained shifts in American health care.
Even during this methods-driven session, presenters encouraged the audience of researchers to consider the implications of their work, in the broader context of patients and the public. Panelists infused remarks with nods to the need for health systems and services researchers to remember why we do what we do. Further, presenters acknowledged the importance of tailoring health systems and services research activities – using patient-centered and/or patient-sensitive models and methods – to ensure that evidence is effectively translated and mobilized to support actionable programmatic or policy change.
The Future of Partnership to Enhance Rigorous Research
I felt encouraged and validated by the knowledge that evidence increasingly suggests the beyond-intrinsic value of effectively and ethically engaging patients and public stakeholders in health research, practice, and policy-making. Most importantly, though, I felt excited that the broader field seems sufficiently primed to embrace the idea that effective and ethical "partnership" can enhance, rather than distract from, truly rigorous research.
Rhetoric associated with pursuit of a "triple aim" has increasingly crept into discussions about both the problems, and the promise, of health care in the U.S. Increasingly, attention is paid to a third objective; we now seem to recognize that effective and economical care should not be prioritized at the expense of patient experience. Sessions at ARM revealed that health services researchers are indeed designing and doing work that is intentionally care-oriented, collaborative, and compassionate. Hopefully, this is indicative that patient-centered approaches will continue to not only be accepted, but increasingly expected in health systems research communities.