Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute

Forsythe, Laura P.; Carman, Kristin L.; Szydlowski, Victoria; Fayish, Lauren; Davidson, Laurie A.; Hickam, David H.; Hall, Courtney D.; Bhat, Geeta; Neu, Denese; Stewart, Lisa; Jalowsky, Maggie; Aronson, Naomi; Anyanwu, Chinenye

doi:10.1377/hlthaff.2018.05067

Cited by 259 publications

(286 citation statements)

References 29 publications

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“…Partners represented 139 different projects, with one to nine partners responding per project (mean ± SD = 1.8 ± 1.2 partners per project). Projects in the sample address a range of health conditions and topics, including cancer, mental and behavioural health, and rare diseases, and used a variety of approaches to engage partners, such as advisory panels, focus groups and patient co‐investigators …”

Section: Resultsmentioning

confidence: 99%

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

Hemphill

Forsythe

Heckert

et al. 2019

Health Expectations

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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.

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Section: Resultsmentioning

confidence: 99%

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

Hemphill

Forsythe

Heckert

et al. 2019

Health Expectations

Self Cite

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“…Three topics were listed by six of the seven groups: Communication and Cultural Sensitivity; Workplace and Insurance Issues; and Newborn Health and Care and Problems Related to Prematurity; but the ranking of these priority topics was more variable across the groups. An additional 5 priority topics were common across the 5 groups in Oakland and • Care Provision During Pregnancy and Birth [4] • Care After Birth [5] • Decision Making During Pregnancy [11] • Preconception, Contraception and Sexuality [12] • Mental Health Support [13] • Maternal Nutrition [15] Why don't we have alternative options for support during delivery? (For example, doula, midwife) (Oakland)…”

Section: Priorities Across Regionsmentioning

confidence: 99%

“…However, there is now growing international consensus that healthcare research must be conducted in partnership with patients and communities, and not on or for them. Research conducted in partnership with communities directly affected by the condition under study can improve recruitment and retention, has greater relevance and credibility, and accelerates translation into clinical practice [1][2][3][4]. The term "community based participatory research" (CBPR) is often used to describe research projects cocreated or driven by community members [5].…”

Section: Introductionmentioning

confidence: 99%

Research priorities of women at risk for preterm birth: findings and a call to action

Franck

McLemore

Williams

et al. 2020

BMC Pregnancy Childbirth

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Background: Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. Methods: We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences.Results: Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions.Conclusions: These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities.

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“…2,3 The shift towards patient-centered outcomes research (PCOR) is grounded in the broader movement in health care towards patient-centered care and shared decision-making, where patients are actively involved in making treatment decisions. [4][5][6][7][8] The United States Centers for Medicare and Medicaid Services (CMS) now prioritizes patient and family engagement in its policies and programs. 9 It is increasingly recognized that a patient-centered approach in kidney disease must occur to improve patient education and outcomes.…”

Section: Introductionmentioning

confidence: 99%

Engaging Patients and Family Members to Design and Implement Patient-Centered Kidney Disease Research

Browne

Swoboda²,

Ephraim

et al. 2020

Preprint

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Background: This article describes a method for successful engagement of patients and family members in a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease.Methods: This project utilized the Patient-Centered Outcomes Research Institute's conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine our patient and family member Co-Investigators' priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper.Results: Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions: The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators.Trial registration: Clinical Trials.gov, NCT02722382. Registered 30 March 2016, https://clinicaltrials.gov/ct2/show/NCT02722382?term=NCT02722382&draw=2&rank=1

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Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute

Cited by 259 publications

References 29 publications

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

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

Research priorities of women at risk for preterm birth: findings and a call to action

Engaging Patients and Family Members to Design and Implement Patient-Centered Kidney Disease Research

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