Engaging patients and stakeholders in preresearch: findings from the Pipeline to Proposal Awards Initiative

J Comp Eff Res. 2020 Jul;9(10):721-736. doi: 10.2217/cer-2019-0203. Epub 2020 Jul 16.

Abstract

Aim: The Patient-Centered Outcomes Research Institute Pipeline to Proposal (P2P) Awards Initiative funded 177 awardees to engage patients and stakeholder partners in preresearch. Based on P2P, we described engagement strategies; outcomes; facilitators; and challenges to inform research funders and stakeholders participating in preresearch. Materials & methods: We used a qualitative approach based on content analysis of program data and interviews with P2P awardees and partners. Results: Awardees developed partnership infrastructure by recruiting patients and stakeholders, establishing clear roles, and providing training. Building trust was key to engaging patients and stakeholders in preresearch. Awardees reported partners were more likely to engage in PCOR in the future. Conclusion: P2P awardees increased capacity of patient and stakeholder partnerships to conduct PCOR.

Keywords: comparative effectiveness research; engagement; evaluation; patient engagement; patient-centered outcomes research; preresearch.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Academies and Institutes
  • Awards and Prizes*
  • Comparative Effectiveness Research
  • Humans
  • Patient Outcome Assessment*
  • Patient Participation*
  • Stakeholder Participation*