Dataset Information

Patient powered research: an approach to building capacity for a hardly reached patient population to engage in cancer research.

ABSTRACT:

Background

Participating in clinical trials is a metric of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to be enrolled in clinical trials and experience a disproportionate burden of cancer mortality compared to Whites. Patient-engaged research is one potential strategy to address racial inequities in clinical trials, but little is known about best practices for engaging Black individuals and communities impacted by cancer in research partnerships.

Methods

We used a community engaged research approach to establish a patient advisory council (PAC) representative of the patient population served by a safety net hospital cancer center. We outline the process of establishing the PAC and the lessons learned.

Results

The inaugural PAC included 7 members representative of the cancer center's patient demographics. PAC members developed a patient centered vision, mission and action plan. PAC and community-academic research partners experienced the transformative power of centering the lived experiences of patients of color to promote health equity in cancer research.

Conclusion

Establishing a patient advisory council at a safety net hospital cancer care center provided a platform for engaging a hardly reached population in patient centered research.

SUBMITTER: Charlot M

PROVIDER: S-EPMC8547568 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature

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Publications

Patient powered research: an approach to building capacity for a hardly reached patient population to engage in cancer research.

Charlot Marjory M Carolan Kelsi K Gawuga Cyrena C Freeman Elmer E Sprague Martinez Linda L

Research involvement and engagement 20211026 1

<h4>Background</h4>Participating in clinical trials is a metric of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to be enrolled in clinical trials and experience a disproportionate burden of cancer mortality compared to Whites. Patient-engaged research is one potential strategy to address racial inequities in clinical trials, but little is known about best practices for engaging Black individuals and communities impacted by cancer in resea ...[more]

PMID: 34702359

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Project description:BackgroundImplementation research (IR) is increasingly gaining popularity as the act of carrying an intention into effect. It is thus an important approach to addressing individual practices, policies, programmes and other technologies to solving public health problems. Low- and middle-income countries (LMICs) continue to experience public health problems which could be addressed using implementation research. These countries however fall behind prioritizing implementation research due to the disorganized approach used to providing knowledge about the value and scope of implementation research. This paper seeks to explain steps taken to resolve this by capacity strengthening activities through a comprehensive implementation research training and mentorship programme which was informed by needs assessment.MethodsThe roll-out of the comprehensive implementation research training and mentorship was done in phases, including engaging the implementation research community through TDR Global, competency building for programme officers and ethical review board/committee members, and practical guidance to develop an implementation research proposal. The Bloom taxonomy guided the training whilst the Kirkpatrick Model was used for the evaluation of the effectiveness of the capacity building.ResultsThe findings identified critical areas of mentors and how mentorship should be structured and the most effective ways of delivering mentorship. These findings were used to develop a mentorship guide in IR. The mentorship guidance is to be used as a check-tool for mentoring participants during trainings as part of the package of resources in implementation research. It is also to be used in equipping review board members with knowledge on ethical issues in implementation research.ConclusionThe approach for providing comprehensive implementation research training and mentorship for programme personnel has provided an opportunity for both potential mentors and mentees to make inputs into developing a mentorship guidance for LMICs. This guidance would help address mentorship initiation and implementation challenges in IR.

Project description:BackgroundLocal authorities (LAs) are increasingly aiming to become more research active. Research ethics review is an important prerequisite of high-quality research. It is not clear what a LA ethics review process can (or should) look like, or whether it is needed in addition to external review processes. We aim to describe the scope and purpose of research ethics processes in LAs across England, and factors that are salient to their design.Study designQualitative interview study.MethodsStaff from 15 LAs in England were recruited to describe their research ethics process using purposeful and snowball sampling. One-hour interviews were conducted using a topic guide with five scenarios, drawn from LA projects. Interview transcripts were thematically analysed using a consensus building process among the research team.ResultsFactors salient to the design of research ethics processes in LAs included: definitions of research, research ownership, and the distinct relationship LAs have with research participants. A typology with four models is used to describe existing processes. These models are: No Process; The Assurance Model (where LAs assure an external ethics committee has reviewed projects); The Advice Model (where there is no formal review, but ethical considerations are made through formal and informal advice); and The Review Model (where LAs establish their own formal internal ethics committees). These typologies emerged from divergent understandings of the role of research in LAs and can reflect varied views of research as an activity "done to a local authority", "done with a local authority" or "owned by a local authority".DiscussionResearch ethics processes in LAs need to reflect various LA approaches to what constitutes research, who owns the research process, and how a LAs relationship with research participants may vary from other settings. As LAs continue articulating what research means in their setting, they need support and guidance to establish research ethics processes that enable research activity, while simultaneously being sensitive to the level of research readiness and distinct LA need.

Dataset Information

Patient powered research: an approach to building capacity for a hardly reached patient population to engage in cancer research.

Background

Methods

Results

Conclusion

Publications

Patient powered research: an approach to building capacity for a hardly reached patient population to engage in cancer research.

Similar Datasets

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