How are PCORI-funded researchers engaging patients in research and what are the ethical implications?

Ellis, Lauren E.; Kass, Nancy E.

doi:10.1080/23294515.2016.1206045

Cited by 39 publications

(45 citation statements)

References 21 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Until recently, almost all research, including CBPR, was typically funded by agencies with limited to no requirement of PPI in setting the research strategy or research agenda. Although this is beginning to shift with large national initiatives such as those in the United Kingdom [6,7], United States (US) [8], and Canada [9], there remain concerns about whether study participants accurately reflect characteristics and views of the people who bear the greates burden of the disease or condition under study and that they have sufficient influence in the decision processes of the funding agencies [10][11][12][13][14]. Therefore, major structural inequalities in the research enterprise persist and perpetuate injustice in healthcare knowledge creation and, as a result, in healthcare delivery [15].…”

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

View full text Add to dashboard Cite

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.

show abstract

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

View full text Add to dashboard Cite

show abstract

“…Direct public involvement and community engagement of service users, consumers, patients and members of local communities in health research, education and social care have become more prevalent in the last decade (Brett et al, 2014;Cabassa, Camacho, Vélez-Grau, & Stefancic, 2017;Concannon et al, 2014;Domecq et al, 2014;Ellis & Kass, 2017;Nilsen, Myrhaug, Johansen, Oliver, & Oxman, 2006;Shen et al, 2017;Shippee et al, 2015). Within this arena of community-engaged work, peer models that engage and partner with local "insiders" are increasingly common.…”

Section: Introductionmentioning

confidence: 99%

Partnering with insiders: A review of peer models across community-engaged research, education and social care

Vaughn

Whetstone

Boards

et al. 2018

Health Soc Care Community

103

View full text Add to dashboard Cite

Within community-engaged research, education and social care, peer models that partner with local "insiders" are increasingly common. Peer models are composed of insider "lay" community members who often share similarities or background with a project's target population. Peers are not academically trained, but work alongside researchers and professionals to carry out specific tasks within a project, or in the truest sense of partnership, peers collaborate throughout the project from start to finish as an equal member of the team. Although peer models are used widely, the literature lacks consistency and clarity. This systematic review of literature used a qualitative thematic synthesis to examine and report how, where and why peer models have been used in research, education and social care. We examined the language and titles used to describe the peers, details of their involvement in community-engaged projects, the setting, content/topic of study, level of engagement and related benefits/outcomes of such models. Focusing on the last 10 years, we conducted a comprehensive literature search twice between September 2016 and June 2017. The search resulted in 814 articles which were assessed for eligibility. Overall, 251 articles met our inclusion criteria and were categorised into three categories: empirical (n = 115); process/descriptive (n = 93); and "about" peers (n = 43). Findings suggest that there is a wide variety of peers, titles and terminology associated with peer models. There is inconsistency in how these models are used and implemented in research studies and projects. The majority of articles used an employment peer model, while only a handful involved peers in all phases of the project. The results of this literature review contribute to understanding the use, development and evolution of peer models. We highlight potential benefits of peer models for peers, their communities and community-engaged work, and we offer recommendations for future implementation of peer models.

show abstract

“…A developing literature attests to the growing importance of and interest in “engaging” communities, participants, and patients in the research process 1 . Several formal frameworks for what we refer to as “engaged research” have been developed and studied, including community‐based participatory research (CBPR), an immersive methodology that was developed in the 1960s; 2 patient‐centered outcomes research (PCOR), a health‐outcomes model that positions patients and other stakeholders as advisors to ensure that health research focuses on outcomes that are important to patients; 3 and, in Europe, participant‐centric initiatives (PCI), a decentralized model of engaged research that links participants and researchers as decision‐makers in large dataset biomedical research with the use of social media 4 . Frameworks for engaged research share a number of drivers and perceived virtues.…”

mentioning

confidence: 99%

Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Childerhose

Finnila

et al. 2019

Ethics & Human Research

View full text Add to dashboard Cite

The expansion of both formal and informal frameworks of “engaged” research in translational research settings raises emerging and substantial normative concerns. In this article, we draw on findings from a focus group study with members of a national consortium of translational genomic research sites. The goals were to catalog informal participant engagement practices, to explore the perceived roots of these practices and the motivations of research staff members for adopting them, and to reflect on their ethical implications. We learned that participant engagement is a deliberate strategy by research staff members both to achieve instrumental research goals and to “do research differently” in response to past research injustices. While many of the participant engagement practices used in translational genomic research are not new, important insights can be gained through a closer examination of the specific contours of participant engagement in this context. These practices appear to have been shaped by the professional training of genetic counselors and by the interests and needs of participants who enroll in clinical genomics studies. The contours of this contemporary application of engaged research principles have relevance not only to clinical genomics research but also to translational research broadly, particularly for how communities of clinical researchers are interpreting the principle of respect for persons. Our findings invite normative questions about the governance of these practices and sociological questions about whether and how clinical researchers in other professions are also engaging participants in translational research settings.

show abstract

How are PCORI-funded researchers engaging patients in research and what are the ethical implications?

Cited by 39 publications

References 21 publications

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

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

Partnering with insiders: A review of peer models across community-engaged research, education and social care

Participant Engagement in Translational Genomics Research: Respect for Persons—and Then Some

Contact Info

Product

Resources

About