Patient, caregiver and clinician views on engagement in comparative effectiveness research

Forsythe, Laura P.; Frank, Lori; Workman, Thomas A; Hilliard, Tandrea; Harwell, Daniel; Fayish, Lauren

doi:10.2217/cer-2016-0062

Cited by 30 publications

(40 citation statements)

References 23 publications

(29 reference statements)

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“…Peers are more likely to feel valued when they are considered equal members of the project team. Partnerships require “mutually respectful relationships through every interaction” and a “culture of transparency” (Forsythe et al., , p. 241). To maintain effective partnerships with peers, it is crucial to establish an environment of trust and facilitate ongoing opportunities for engagement and deep involvement in the research, education or intervention process.…”

Section: Discussionmentioning

confidence: 99%

“…Although there is good evidence that peer models greatly benefit the research, education and intervention process, it is also imperative to consider from the outset of the project the translation of findings to real‐world settings and the benefits to peers and their communities. If peers are meaningfully involved from the beginning to end in all phases of the project including results translation and dissemination, there is a greater likelihood that project outcomes will be more useful, relevant and beneficial to peers and their communities (Forsythe et al., ). Share decision‐making and power . Peer models can use a range of strategies to share decision‐making, power and leadership.…”

Section: Discussionmentioning

confidence: 99%

“…Within the empirical and process/descriptive articles, the most common activity of the peers was a research-related task including data collection, recruitment and/or data analysis. Involving peers in research tasks can greatly improve the quality, relevance and acceptability of the research across the preparatory (prioritisation, planning and funding), execution (study design and procedures, recruitment, data collection and data analysis) and translation (dissemination, implementation and evaluation) phases of research (Domecq et al, 2014;Forsythe et al, 2017;Staniszewska et al, 2011). Other common peer activities described in the empirical and Only a handful of studies described projects where peers were involved in all aspects of the project from start to finish.…”

Section: What Types Of Models Are Being Used Within a Peer Approachmentioning

confidence: 99%

See 2 more Smart Citations

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

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: What Types Of Models Are Being Used Within a Peer Approachmentioning

confidence: 99%

See 1 more Smart Citation

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

show abstract

“…The specific consultative needs will depend on the intended use of the study, end points involved, novelty of the approach, perceived reliability of the data, and other factors. The experience at the Patient‐Centered Outcomes Research Institute is useful in this regard …”

Section: Recommendations and Rationalesmentioning

confidence: 99%

Good practices for real‐world data studies of treatment and/or comparative effectiveness: Recommendations from the joint ISPOR‐ISPE Special Task Force on real‐world evidence in health care decision making

Berger¹,

Sox

Willke³

et al. 2017

Pharmacoepidemiology and Drug

319

284

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PurposeReal‐world evidence (RWE) includes data from retrospective or prospective observational studies and observational registries and provides insights beyond those addressed by randomized controlled trials. RWE studies aim to improve health care decision making.MethodsThe International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the International Society for Pharmacoepidemiology (ISPE) created a task force to make recommendations regarding good procedural practices that would enhance decision makers' confidence in evidence derived from RWD studies. Peer review by ISPOR/ISPE members and task force participants provided a consensus‐building iterative process for the topics and framing of recommendations.ResultsThe ISPOR/ISPE Task Force recommendations cover seven topics such as study registration, replicability, and stakeholder involvement in RWE studies. These recommendations, in concert with earlier recommendations about study methodology, provide a trustworthy foundation for the expanded use of RWE in health care decision making.ConclusionThe focus of these recommendations is good procedural practices for studies that test a specific hypothesis in a specific population. We recognize that some of the recommendations in this report may not be widely adopted without appropriate incentives from decision makers, journal editors, and other key stakeholders.

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“…In designing the roles and modes of engagement, research teams should be responsive to stakeholder views about how they would like to be involved. [27][28][29][30][31] Researchers might try to learn from stakeholders about their interest in the research topic, including what the stakeholders want to get out of being involved. Furthermore, researchers should consider communicating about the interests and potential roles of stakeholders before a plan is settled.…”

Section: What Are the Appropriate Roles And Modes By Which Stakeholdementioning

confidence: 99%

Practical Guidance for Involving Stakeholders in Health Research

et al. 2018

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Stakeholder engagement is increasingly common in health research, with protocols for engaging multiple stakeholder groups becoming normative in patientcentered outcomes research. Previous work has focused on identifying relevant stakeholder groups with whom to work and on working with stakeholders in evidence implementation. This paper draws on the expertise of a team from four countries-Canada, Australia, the UK, and the USA-to provide researchers with practical guidance for carrying out multi-stakeholder-engaged projects: we present a list of questions to assist in selecting appropriate roles and modes of engagement; we introduce a matrix to help summarize engagement activities; and we provide a list of online resources. This guidance, matrix, and list of resources can assist researchers to consider more systematically which stakeholder groups to involve, in what study roles, and by what modes of engagement. By documenting how stakeholders are paired up with specific roles, the matrix also provides a potential structure for evaluating the impact of stakeholder engagement.

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Patient, caregiver and clinician views on engagement in comparative effectiveness research

Abstract: Patients, caregivers and clinicians are interested in research roles that emphasize usefulness and understandability of research.

Cited by 30 publications

References 23 publications

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

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

Good practices for real‐world data studies of treatment and/or comparative effectiveness: Recommendations from the joint ISPOR‐ISPE Special Task Force on real‐world evidence in health care decision making

Practical Guidance for Involving Stakeholders in Health Research

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