The value of engaging patients in care and research is accumulating. Patients’ knowledge, skills and behaviors wield an enormous influence on healthcare outcomes. They bring essential knowledge and experience that is unique and essential to clinical and translational research.
Patients are rarely asked about their preferences regarding what critical research questions should be answered. The result is a substantial misalignment between what matters most to patients and what investigators study. Patient exclusion has diminished the applied value of research and the unacceptably slow adoption of evidence-based care.
To prepare for the conference, the project team systematically assessed the state of patient engagement in family medicine and how it influences readiness to participate in patient-centered outcomes research. Two primary ways this was accomplished is through a survey and on-site visits of family medicine offices engaged in patient engagement activities. The early work of this project has produced a wealth of information about how family physicians engage patients in practice and research initiatives.
Current Practices Survey – An online survey was administered to learn how family physicians, their clinical teams and their practices are engaging patients and patient-families The survey findings indicate that the topic of patient engagement was of interest and considered important to clinicians completing the survey irrespective of their seniority, practice setting, or current engagement activities. The survey also indicated that the highest levels of enthusiasm for patient engagement is in improving care and ensuring that outcomes are aligned with patients’ values. While still seen as important, there was more moderated enthusiasm for how patient engagement might influence research that informs evidence-based care.
Site Visits –Visits were made to six family medicine offices that are embracing engagement and developing innovative ways to bring patients’ voices into practice-based research or quality improvement activities. The site visits revealed a rich diversity of approach and local practice culture regarding patient engagement that include leading engagement through participation in practice-based research, outreach to vulnerable populations, and through a comprehensive infrastructure built to influence and infuse patient experience across all aspects of clinic activities.
Complete findings from the survey and site visits can be read in the Issue Brief.
The information collected from the survey and site visits was used to identify key topics and develop informative and interactive breakout sessions. This pioneering conference used novel and interactive approaches to encourage participants to share perspectives, innovate and institute authentic patient engagement approaches, and make patient engagement routine for healthcare and health services research.
The goal of the Patient Engagement in Family Medicine Conference was to develop nimble and well-informed steps to make “next day” changes that participants can implement in clinical settings to encourage and/or establish patient engagement that ultimately results in readiness to participate in PCOR. Rather than wait for the “perfect” solution, the key objective of the meeting is to offer participants distilled, simple, yet meaningful steps they can adopt quickly. These steps also must be easy and accomplished at little cost. If these engagement “next day” changes occur, a corollary outcome over time is an increase in practice readiness to participate in patient-centered outcomes research. This contributes to more widespread engagement of practicing clinicians in primary care research and durable partnerships between practices and the patients they serve. Increasing practice and practice-based research and network readiness for PCOR depends on establishing engagement infrastructure that supports patient and family engagement in all healthcare settings.
The specific aims of the project are to:
1. Collect current family medicine practice-based patient and community engagement models: In year one, to prepare for the conference, the team will systematically assess the current state of patient engagement in family medicine as it influences readiness to participate in PCOR and areas of focus for the conference.
2. Convene the conference planning committee and develop the conference agenda: Based on the breadth and diversity of patient engagement models revealed and described during the first phase of this project, the project team will be able to identify leading practices and keynote discussion leaders/speakers for the conference. The project team will develop a conference planning committee and connect with individuals who will agree to join the project and participate on the conference from identified and interested physicians, practice-engaged investigators and patient leaders/collaborators. The conference planning committee will develop a plan to use novel, interactive approaches to enhance engagement and participation before, during, and after the conference among patients, clinicians, and investigators.
3. Widely share subsequent engagement processes: The output of the conference will result in ideas or practices that are practical, easily adopted, and improvement oriented. The project team anticipates being able to share methodologies that have a high potential impact to deliver patient-engaged and patient-informed care while simultaneously nurturing a commitment by practices to become involved in comparative effectiveness research in primary care.
For additional information about this study, please contact:
Jennifer Carroll, MD, MPH
This study is funded by contract from the Patient-Centered Outcomes Research Institute (PCORI)