Best Practices in Patient Engagement in Research: Creating an Engagement Checklist
patient engagement, patient-centered outcomes research
Background/Aims: With the establishment of the Patient-Centered Outcomes Research Institute in 2010 and subsequent explosion in recognition of the importance of patient perspectives in research to improve patient decision-making and health outcomes, patient engagement in research is an increasingly critical aspect of the research process. The HMORN Patient Engagement in Research Scientific Interest Group (PER SIG) was established to improve the ability of member organization research teams to effectively and meaningfully engage patients and other stakeholders in the continuum of research, from developing appropriate research questions to disseminating research findings. One of the 2014 goals for the PER SIG was to create an engagement checklist to guide research teams in planning and recruiting for patient engagement, and provide best practices for their engagement.
Methods: We created a comprehensive questionnaire encompassing all aspects of the engagement process, including prompts for intentionality/justification for engaging patients, patient roles and stages of participation, logistical details and planning, human resource issues (e.g. compensation, contracts), IRB oversight, recruiting, training for patient and research team members, communication plans, and engagement monitoring and evaluation. We fielded our Web-based survey to all members of the PER SIG and other research colleagues with experience engaging patients as members of research teams.
Results: We received 23 responses to the survey. From the results and comments provided, we created a draft checklist of items and practices critical to the engagement process. This draft was vetted by PER SIG members and discussed at a monthly PER SIG conference call, then finalized as a “working draft.” Broader dissemination is currently underway, and this abstract, leading to further dissemination at the annual meeting, is one goal of the dissemination plan.
Discussion: Patient engagement in research is a complex process requiring thoughtful planning and preparation as well as continued monitoring and evaluation throughout the life of the research project. The patient engagement checklist provides research teams with guidance for each step of the process, promoting use of best practices and encouraging meaningful engagement of patients as members of the research team.
Madrid SD, Wright LA. Best Practices in Patient Engagement in Research: Creating an Engagement Checklist. J Patient Cent Res Rev 2015;2:133. http://dx.doi.org/10.17294/2330-0698.1178