Mapping and Resourcing Patient and Stakeholder Engagement Along Ten-Step Patient-Centered Outcomes Research Continuum Framework [Methods Study], United States, 2015-2020 (ICPSR 39514)

Version Date: Oct 14, 2025

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Principal Investigator(s):
C. Daniel Mullins, University of Maryland, Baltimore

https://doi.org/10.3886/ICPSR39514.v1

Version V1

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Summary

To develop a patient engagement translation table (PETT) to give researchers guidance about which engagement methods are suitable for different steps of a research study. The study had 4 main objectives:

  1. Developing a PETT that maps patient engagement methods to the 10-Step PCOR Continuum Framework for Patient and Stakeholder Engagement
  2. Assessing the time, staff, and financial resources required for planning and executing patient engagement activities for each method and for special considerations for underrepresented patient groups
  3. Highlighting patient engagement methods that enhance engagement of underrepresented patient groups
  4. Developing a collaborative strategy for dissemination with PCORI and other stakeholders

Citation

Mullins, C. Daniel. Mapping and Resourcing Patient and Stakeholder Engagement Along Ten-Step Patient-Centered Outcomes Research Continuum Framework [Methods Study], United States, 2015-2020. Inter-university Consortium for Political and Social Research [distributor], 2025-10-14. https://doi.org/10.3886/ICPSR39514.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1409-20792)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2015 -- 2020
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Study Purpose

To develop a patient engagement translation table (PETT) to give researchers guidance about which engagement methods are suitable for different steps of a research study. The study had 4 main objectives:

  1. Developing a PETT that maps patient engagement methods to the 10-Step PCOR Continuum Framework for Patient and Stakeholder Engagement
  2. Assessing the time, staff, and financial resources required for planning and executing patient engagement activities for each method and for special considerations for underrepresented patient groups
  3. Highlighting patient engagement methods that enhance engagement of underrepresented patient groups
  4. Developing a collaborative strategy for dissemination with PCORI and other stakeholders

Study Design

This three-phase, mixed-methods study developed a PETT for researchers. In phase 1, the research team developed a preliminary PETT based on an environmental scan of engagement methods used in research studies. In the scan, the team retrieved data from 200 qualifying articles found in peer-reviewed and gray literature. The team developed an inventory of engagement methods and assigned each method to one of nine categories: community partnerships, focus groups, interviews, meetings, sharing print materials, connecting through social media, storytelling, surveys, and including patients as research team members.

In phase 2, the research team developed three additional draft PETTs based on interviews and focus groups with individuals representing the perspectives of patients, researchers, and other research partners. Each participant first mapped the engagement method categories developed in phase 1 to the appropriate research steps. Participants received cards describing each engagement method and placed them on a game board displaying the research steps. Next, in interviews or focus groups, participants discussed their reasoning for completing the activity as they did.

Phase 2 included 160 patients, caregivers, patient advocates, healthcare providers, researchers, and policy makers from Baltimore, Maryland. Of these, 59% were African American, 43% were white, and 8% were Latino or Hispanic. The average age was 53.

In phase 3, to create a consensus PETT, the research team worked with an eight-member Stakeholder Advisory Board that included patients, patient advocates, researchers, and healthcare industry representatives. The team consolidated the four PETTs developed during phases 1 and 2 into one table. Then, after the board provided three rounds of feedback, the team finalized the PETT. The consensus PETT rated how appropriate each engagement method was for each research step.

Universe

Patients, caregivers, patient advocates, healthcare providers, researchers, and policy makers from Baltimore, Maryland

Data Source

Peer-reviewed literature databases (MEDLINE, CINAHL, PsycINFO, Embase, Scopus, Google Scholar), card mappings, interviews, focus groups, Stakeholder Advisory Board feedback

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Original Release Date

2025-10-14

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Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

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