Dataset Information

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings.

ABSTRACT:

Background

US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs. The Patient-Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health-care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health-care decision making.

Objective

To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI-funded research projects and how such engagement changed their lives.

Methods

We conducted thematic analysis of open-ended survey responses from 255 patients, family caregivers and individuals from advocacy and community-based organizations who engaged as partners on 139 PCORI-funded research projects focusing on a range of health conditions.

Results

Partners' motivations for engaging in research were oriented primarily towards benefiting others, including a desire to improve patients' lives and to support effective health-care interventions. In addition to feeling they made a positive difference, many partners reported direct benefits from engagement, such as new relationships and improved health habits.

Discussion and conclusions

By identifying patient and caregiver motivations for engaging in research partnerships and what they get out of the experience, our study may help research teams and organizations attract partners and foster more satisfying and sustainable partnerships. Our findings also add to evidence that engagement benefits the people involved as partners, strengthening the case for more widespread engagement.

SUBMITTER: Hemphill R

PROVIDER: S-EPMC7104645 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Publications

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings.

Hemphill Rachel R Forsythe Laura P LP Heckert Andrea L AL Amolegbe Andrew A Maurer Maureen M Carman Kristin L KL Mangrum Rikki R Stewart Lisa L Fearon Ninma N Esmail Laura L

Health expectations : an international journal of public participation in health care and health policy 20191204 2

<h4>Background</h4>US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs. The Patient-Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health-care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminati ...[more]

PMID: 31800154

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Dataset Information

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings.

Background

Objective

Methods

Results

Discussion and conclusions

Publications

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings.

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