Bringing lived experience into research: good practices for public involvement in research

Fowler-Davis, Sally; Woodward, C; Greenfield, B; Homer, Catherine; Williams, Kevin; Hameed, W; Riley, Barbara; Roberts, Donna M.; Bryan, G

doi:10.1177/17579139221102229

Cited by 2 publications

(1 citation statement)

References 11 publications

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“…The process of setting up transparent and fair criteria for engaging patient partners while attaining appropriate diversity and representation is a major gap. 14 , 47 , 88 , 121 , 134 , 135 , 155 , 190 Some initial efforts in this domain have occurred, 14 , 39 , 47 , 95 , 118 , 151 , 155 eg, using established patient engagement support units, 95 , 169 , 182 structured research educational programs for community members, 35 , 75 , 87 and volunteers most impacted by the disease/condition, 26 , 45 , 52 particularly in mental health research. 95 However, investigating and optimizing these efforts for pain research remains an important priority.…”

Section: Remaining Gaps and Future Research Prioritiesmentioning

confidence: 99%

Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations

Haroutounian,

Holzer,

Kerns

et al. 2023

Pain

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In the traditional clinical research model, patients are typically involved only as participants. However, there has been a shift in recent years highlighting the value and contributions that patients bring as members of the research team, across the clinical research lifecycle. It is becoming increasingly evident that to develop research that is both meaningful to people who have the targeted condition and is feasible, there are important benefits of involving patients in the planning, conduct, and dissemination of research from its earliest stages. In fact, research funders and regulatory agencies are now explicitly encouraging, and sometimes requiring, that patients are engaged as partners in research. Although this approach has become commonplace in some fields of clinical research, it remains the exception in clinical pain research. As such, the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials convened a meeting with patient partners and international representatives from academia, patient advocacy groups, government regulatory agencies, research funding organizations, academic journals, and the biopharmaceutical industry to develop consensus recommendations for advancing patient engagement in all stages of clinical pain research in an effective and purposeful manner. This article summarizes the results of this meeting and offers considerations for meaningful and authentic engagement of patient partners in clinical pain research, including recommendations for representation, timing, continuous engagement, measurement, reporting, and research dissemination.

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Section: Remaining Gaps and Future Research Prioritiesmentioning

confidence: 99%

Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations

Haroutounian,

Holzer,

Kerns

et al. 2023

Pain

View full text Add to dashboard Cite

show abstract

Understanding the Needs and Priorities of People Living with Persistent Pain and Long-Term Musculoskeletal Conditions during the COVID-19 Pandemic—A Public Involvement Project

et al. 2022

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Background: Critiques of public involvement (PI) are associated with failing to be inclusive of under-represented groups, and this leads to research that fails to include a diversity of perspectives. Aim: The aim of this PI project was to understand the experiences and priorities of people from three seldom-heard groups whose musculoskeletal pain may have been exacerbated or treatment delayed due to COVID-19. Engaging representatives to report diverse experiences was important, given the goal of developing further research into personalised and integrated care and addressing population health concerns about access and self-management for people with musculoskeletal pain. Methods: The project was approved via Sheffield Hallam University Ethics but was exempt from further HRA approval. A literature review was conducted, followed by informal individual and group discussions involving professionals and people with lived experience of (a) fibromyalgia pain, (b) those waiting for elective surgery and (c) experts associated with the care home sector. Findings from the literature review were combined with the insights from the public involvement. Resulting narratives were developed to highlight the challenges associated with persistent pain and informed the creation of consensus statements on the priorities for service improvement and future research. The consensus statements were shared and refined with input from an expert steering group. Results: The narratives describe pain as a uniformly difficult experience to share with professionals; it is described as exhausting, frustrating and socially limiting. Pain leads to exclusion from routine daily activities and often resigns people to feeling and being unwell. In all cases, there are concerns about accessing and improving services and critical issues associated with optimising physical activity, functional wellbeing and managing polypharmacy. Exercise and/or mobilisation are important and commonly used self-management strategies, but opportunity and advice about safe methods are variable. Services should focus on personalised care, including self-management support and medication management, so that people’s views and needs are heard and validated by health professionals. Conclusions: More research is needed to explore the most effective pain management strategies, and public involvement is important to shape the most relevant research questions. Health and care systems evaluation is also needed to address the scale of the population health need. The pandemic appears to have highlighted pre-existing shortcomings in holistic pain management.

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Bringing lived experience into research: good practices for public involvement in research

Abstract: Woodward et al. present this article as an example of good practice and reflection on the current development of a public involvement group.

Cited by 2 publications

References 11 publications

Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations

Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations

Understanding the Needs and Priorities of People Living with Persistent Pain and Long-Term Musculoskeletal Conditions during the COVID-19 Pandemic—A Public Involvement Project

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