Building Meaningful Patient Engagement in Research
By Nate Warren, MPH, Research Associate and Jee Oakley, MPH, Research Associate
Strategies for engaging with patients in order to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for, or the impacts of, meaningful patient engagement. Through the Accelerating Data Value Across a National Community Health Center Network(ADVANCE) clinical data research network (CDRN), led by OCHIN Inc., we have worked with patients, caretakers, clinicians and other stakeholders to codevelop the ADVANCE engagement framework, and have implemented this framework in partnership with network leaders. The ADVANCE mission statement supports this work, stating, “…in the past, vulnerable patient populations have not been included in many studies. As a network of safety net clinics, ADVANCE is able to help bridge this gap. Patients, caregivers, and clinicians are helping to guide the ADVANCE research plan, develop study questions and materials, and share findings. By taking part in ADVANCE projects, people have an opportunity to improve care for themselves, their families, and their communities.”
In October 2018, we published an article in Medical Care documenting our work in this area with a key focus on patient engagement. Through the first and second phases of our ADVANCE CDRN, patient advisors have been involved in numerous activities. They’ve participated in rigorous usability testing, resulting in recommendations to make patient portal surveys more visible, and their purpose more relevant for patients. Patient advisors have also guided layout and workflows for new patient-reported outcomes (PROs) tools. These advisors are contributing to the development of best practices to increase patient portal adoption and other patient engagement communication strategies (e.g., text messaging, social media). Through ADVANCE, Patient Engagement Panel (PEP) members have increased their involvement as coinvestigators directly advising on prepared and/or submitted proposals and one member also successfully received two PCORI Pipeline to Proposals (Tier One and Tier Two) awards and has built a separate patient-led collaborative research team.
Patient coauthors have advised, guided, and been published on accepted manuscripts, including key reviews and contributions from PEP member coauthors with lived experience of the condition of study. Patient investigators have presented at national and international conferences, and coauthored research proposals and manuscripts. Lastly, the ADVANCE team focused on efficient and effective ways to widely disseminate PBRN research findings, seen by our network stakeholders as a critical component for accelerating the translation of research into practice. Social media strategies, including podcasts and blogging, have the potential to augment the reach of research beyond traditional publication venues, and have been a major facet of our engagement strategy (e.g. patient ambassador authoring a PCORI national blog post, patient investigators authoring OCHIN newsletter articles, and co-leading video interviews).
Reviewing the work of other PCORnet research networks around the topic of engagement, it seems evident that there are still gaps in methodology for evaluating engagement in a structured, unified fashion. Our metrics for success vary greatly amongst Clinical Data Research Networks, Patient Powered Research Networks, PCORnet Demonstration Projects and other research teams’ processes. PCORnet is working to create a set of recommendations for measuring success in engagement, which may aid in this gap. Another knowledge gap appears to be the rare occasion of successfully engaging with larger and more diverse patient advisor groups (in terms of age, geographic location, race/ethnicity, SOGI and conditions of study) across national networks rather than smaller qualitative groups. Utilizing strategies through technology, regional hubs for in-person engagement opportunities and partnerships with existing clinic patient boards, community-based organizations and other resources, may aid in this gap.
OCHIN is happy to share that the ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. We are currently recruiting for our Patient Engagement Panel to expand this work spread even further. If you feel your work would benefit from the engagement of the PEP, but would like more information before making a request, please feel welcome to reach out to our PEP Coordinators, at PEP@ochin.org