Implications of research that excludes under-served populations

Rochester, Lynn; Carroll, Camille

doi:10.1038/s41582-022-00688-9

Cited by 5 publications

(1 citation statement)

References 10 publications

(11 reference statements)

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“…Specifically, we will host regular online meetings with members of the Community Advisory Board members to foster belonging and a shared experience, we will plan mock research experiments with Community Advisory Board members, and we will recruit more members to increase the board diversity. This last step will be crucial as community-based participatory research is viewed as a way to engage under-served groups, but only if they have the opportunity to participate with equitable involvement in all phases of the research process (Rochester & Carroll, 2022).…”

Section: Provide Pronouns To Provide Pronouns To Address Members Of T...mentioning

confidence: 99%

Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study

Cunff

Logan

Ford

et al. 2023

Journal of Participatory Research Methods

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Inclusive research practice characterized by the involvement of neurodivergent people in meaningful roles has been described as a “requirement of excellence” in neurodiversity research. This report describes a co-design process in partnership with a Community Advisory Board undertaken to develop a research study involving neurotypical and neurodivergent students as participants. From the formation of the partnership with seven Community Advisory Board members to the outcomes of the co-design process, this report details the methods associated with each step, as well as the benefits and challenges collated in collaboration with members of the Community Advisory Board. Opportunities for improvement in co-design for participatory neurodiversity research are suggested.

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Section: Provide Pronouns To Provide Pronouns To Address Members Of T...mentioning

confidence: 99%

Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study

Cunff

Logan

Ford

et al. 2023

Journal of Participatory Research Methods

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More than a participant in trials of cell and gene therapy: Hearing the voices of people living with neurodegenerative diseases

Lane

Isaacs

Mathur³

2022

International Review of Neurobiology

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Mobilizing Patient and Public Involvement in the Development of Real-World Digital Technology Solutions: Tutorial

Keogh,

Mc Ardle,

Diaconu

et al. 2023

J Med Internet Res

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Although the value of patient and public involvement and engagement (PPIE) activities in the development of new interventions and tools is well known, little guidance exists on how to perform these activities in a meaningful way. This is particularly true within large research consortia that target multiple objectives, include multiple patient groups, and work across many countries. Without clear guidance, there is a risk that PPIE may not capture patient opinions and needs correctly, thereby reducing the usefulness and effectiveness of new tools. Mobilise-D is an example of a large research consortium that aims to develop new digital outcome measures for real-world walking in 4 patient cohorts. Mobility is an important indicator of physical health. As such, there is potential clinical value in being able to accurately measure a person’s mobility in their daily life environment to help researchers and clinicians better track changes and patterns in a person’s daily life and activities. To achieve this, there is a need to create new ways of measuring walking. Recent advancements in digital technology help researchers meet this need. However, before any new measure can be used, researchers, health care professionals, and regulators need to know that the digital method is accurate and both accepted by and produces meaningful outcomes for patients and clinicians. Therefore, this paper outlines how PPIE structures were developed in the Mobilise-D consortium, providing details about the steps taken to implement PPIE, the experiences PPIE contributors had within this process, the lessons learned from the experiences, and recommendations for others who may want to do similar work in the future. The work outlined in this paper provided the Mobilise-D consortium with a foundation from which future PPIE tasks can be created and managed with clearly defined collaboration between researchers and patient representatives across Europe. This paper provides guidance on the work required to set up PPIE structures within a large consortium to promote and support the creation of meaningful and efficient PPIE related to the development of digital mobility outcomes.

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Implications of research that excludes under-served populations

Cited by 5 publications

References 10 publications

Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study

Co-Design for Participatory Neurodiversity Research: Collaborating With a Community Advisory Board to Design a Research Study

More than a participant in trials of cell and gene therapy: Hearing the voices of people living with neurodegenerative diseases

Mobilizing Patient and Public Involvement in the Development of Real-World Digital Technology Solutions: Tutorial

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