Background: Meaningfully collaborating with patients in the research process can improve the quality and relevance of a research study. Patients bring diverse and thoughtful perspectives to research teams and ensuring that they are engaged is a measure of success. Unfortunately, few surveys for measuring patient engagement in research exist, and existing surveys have not been tested in diverse populations. In PEIR IDEAS - Patient Engaged Validation of the Patient Engagement In Research (PEIR) Survey Enhanced by Inclusion, Diversity, Equity, Acceptance, and Safety (IDEAS), a diverse pool of patients from the Henry Ford Health’s (HFH) Patient Engaged Research Center (PERC), an established group of 465 Patient Advisors (PAs), will not only test the survey, but will also play an integral role in conducting the research that improves the survey.
Proposed Solution of the Problem: The purpose of PEIR IDEAS is to convene a team of researchers, patients and community partners that will conduct research side-by-side in order to refine a survey which quantifies meaningful patient engagement in research.
Objectives: The team will be created at HFH in Detroit, Michigan with a mid-term goal of creating the sustained engagement of a diverse group of stakeholders in the design, implementation, evaluation and dissemination of science of engagement research. The long-term objective is to produce a model for measuring meaningful patient engagement in research that is adaptable for various settings and catchment areas, understanding how engagement in research improves the aims, design and impact of research findings, which may in turn improve patient care and satisfaction. To accomplish these mid- and long-term goals, the proposed project will complete the following short-term objectives:
Aim 1. Establish a consultative stakeholder team (i.e., Science of EngAgement Team–SEAT) comprised of patients, researchers who work with patients, community members and the existing PERC team.
- Advertise the opportunity to join SEAT to the entire PA Program with the goal of recruiting an additional four SEAT members.
- Train SEAT team on all aspects of questionnaire validation, including how to moderate focus groups and analyze qualitative and quantitative data.
Aim 2. Evaluate the Patient Engagement In Research Scale (PEIRS) in a new population of respondents (i.e., diverse PAs) with PAs meaningfully engaged as researcher partners.
- Use focus groups, co-moderated by a researcher and a trained patient, to gather expert opinions from patients and researchers alike to gain insight into their overall assessment of the survey.
- Test the survey in a representative sample of patients.
- Using the results of the focus groups and the survey trial, make statistically informed decisions on the particular survey items that belong/do not belong in the final version.
Projected Outcomes and Outputs: By the end of the proposed project, all involved patients will have received comprehensive training on how to assess a survey. The final survey, informed by the end-to-end research, will be disseminated to all project participants, shared on PERC’s website and shared with PCORI as an Engagement Resource. Additionally, ideas for further dissemination will be generated at SEAT meetings with patient input.
Patient and Stakeholder Engagement Plan/Project Collaborators: SEAT plans to recruit patients with a variety of diverse perspectives in order to ensure that the research and development of the metric is informed by multiple viewpoints. SEAT will include nine existing stakeholders, two employees who have utilized patients in system initiatives, a physician scientist, two community partners and the existing PERC team, and it will meet in both virtual and in-person formats throughout the two years of the proposed study. The team will engage with 12 focus groups of subject matter experts (i.e., patients and project leaders), as well as conducting multiple rounds of testing the survey with up to 370 patients.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.