Partners in projects: Preparing for public involvement in health and social care research

Parkes, Jacqueline; Pyer, Michelle; Wray, Paula; Taylor, Jane

doi:10.1016/j.healthpol.2014.04.014

Cited by 27 publications

(33 citation statements)

References 27 publications

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“…We identified seven documents that related to public membership of committees, such as research ethics committees . The other papers we included related to public membership of boards (11 documents) or relevant documents outlining training programmes for enhancing public involvement more generally (three papers) …”

Section: Resultsmentioning

confidence: 99%

Supporting public involvement in interview and other panels: a systematic review

Baxter

Clowes

Muir

et al. 2016

Health Expectations

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BackgroundMembers of the public are increasingly being invited to become members of a variety of different panels and boards.ObjectiveThis study aimed to systematically search the literature to identify studies relating to support or training provided to members of the public who are asked to be members of an interview panel.Search strategyA systematic search for published and unpublished studies was carried out from June to September 2015. The search methods included electronic database searching, reference list screening, citation searching and scrutinizing online sources.Inclusion criteriaWe included studies of any design including published and unpublished documents which outlined preparation or guidance relating to public participants who were members of interview panels or representatives on other types of panels or committees.Data synthesisResults were synthesised via narrative methods.Main resultsThirty‐six documents were included in the review. Scrutiny of this literature highlighted ten areas which require consideration when including members of the public on interview panels: financial resources; clarity of role; role in the interview process; role in evaluation; training; orientation/induction; information needs; terminology; support; and other public representative needs such as timing, accessibility and support with information technology.Discussion and conclusionsThe results of the review emphasize a range of elements that need to be fully considered when planning the involvement of public participants on interview panels. It highlights potential issues relating to the degree of involvement of public representatives in evaluating/grading decisions and the need for preparation and on‐going support.

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Section: Resultsmentioning

confidence: 99%

Supporting public involvement in interview and other panels: a systematic review

Baxter

Clowes

Muir

et al. 2016

Health Expectations

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“…Making judgements about which lay representatives were credible and competent involved shaping processes and practice for PPI 207 to exclude those moving beyond the star. So the argument ricochets between training and 'professionalisation' of PPI resulting in the loss of the lay perspective 22,208 and also to counter the moral argument for PPI, 208 and the need for some training 209,210 to carry out certain tasks required in the PPI role. Although this was not articulated by any of our PPI respondents, in the ethnographic study conducted by Thompson et al 46 they describe the balancing act carried out by the PPI respondents to have enough knowledge to be able to contribute within a trial steering committee, but also to remain credible.…”

Section: Impact Of Involvement On Patient and Public Representativesmentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

228

281

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BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…Though the evidence base demonstrating that the perspective of people with lived experience plays an integral role in the process by which research is identified, prioritized, designed, conducted and disseminated, continues to grow ― evidence of the relative impact of public involvement in health research is still limited and weak at this time, primarily due to poor reporting, with many studies only providing partial information and a lack of consistency in terminology [2, 70]. This in turn can impact our overall understanding of public involvement in health research ― of what works, for whom, in what context and why [9].…”

Section: Thinking About Evaluation: Measuring Success From a Health Ementioning

confidence: 99%

“…Patient engagement in health research is driven by the belief that greater involvement of patients throughout the research process (including as co-researchers) will lead to improved outcomes and an enhanced healthcare system, and will improve the quality, appropriateness, acceptability, transparency and relevance of research — ensuring it addresses issues of importance to patients and the public [2–9]. …”

Section: Introductionmentioning

confidence: 99%

Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis

Shimmin

Wittmeier

Lavoie

et al. 2017

BMC Health Serv Res

116

154

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BackgroundThe concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people’s lives. Though patient engagement conceptually begins to disrupt the identity of “researcher,” and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of “patient” as a homogenous group, denying the reality that individuals’ economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways.DiscussionPatient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness — the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis.SummaryThis article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both “patient” and “researcher,” spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and resiliency — integral to the advancement of the science of patient engagement in health research.

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Partners in projects: Preparing for public involvement in health and social care research

Cited by 27 publications

References 27 publications

Supporting public involvement in interview and other panels: a systematic review

Supporting public involvement in interview and other panels: a systematic review

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis

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