19  Launch of the public involvement in research impact toolkit

Newman, Alisha; Baddeley, Elin; Seddon, Kathy; Hepburn, Julie; McAlister, Bob; Peddle, Sarah; Cleary, Kate; Nelson, Annmarie

doi:10.1136/spcare-2023-mcrc.18

Cited by 2 publications

(2 citation statements)

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“…Recently, the Marie Curie Research Group and Wales Cancer Research Centre at Cardiff University have developed the Public Involvement in Research Impact Toolkit (PIRIT). 10 This is free to use and available online (https://www.cardiff.ac.uk/marie-curie-research-centre/patientand-public-involvement/public-involvement-in-research-impact-toolkit-pirit). It was designed as a set of pragmatic tools to support researchers working with public contributors who aim to: i) proactively integrate PI into the research project through planning; ii) allow teams to track the activity of PI public contributors and evaluate the difference they have made to the research; iii) allow teams to report this in a format that benchmarks activities against the UK standards for PI.…”

Section: Evaluating Public Involvement Contributionmentioning

confidence: 99%

Patient and public involvement in cancer-associated thrombosis research: necessary or glorified tokenism?

Noble

2024

Bleed Thromb Vascul Biol

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The advantages of patient and public involvement (PPI) in research are becoming more widely known, however different research organizations have different rates of adoption. Comparably, some groups provide tokenistic participation in the research process, which is inconsistent with the extent to which PPI partners are truly involved. Recent developments in the field of cancer-associated thrombosis (CAT) research have shown how crucial PPI is to the foundation of the entire research process, from formulating the research question to disseminating the findings. This manuscript aims to present an overview of PPI within the framework of CAT research and demonstrate how, when used appropriately, PPI can improve a project’s overall success, rigor, and relevance.

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Section: Evaluating Public Involvement Contributionmentioning

confidence: 99%

Patient and public involvement in cancer-associated thrombosis research: necessary or glorified tokenism?

Noble

2024

Bleed Thromb Vascul Biol

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“…3) Risk assessment -To ensure PI and PE activities are conducted in a safe and ethical manner, particularly when engaging and/or involving 'vulnerable' groups, refer to published guidance on conducting ethical PI&E [12][13][14][15][16], consider completing a specifically designed PI and PE risk assessment (See Appendix 2 for an example) or using the PIRIT tool [26]…”

Section: Recommendations For Moving Forwardsmentioning

confidence: 99%

Public involvement and engagement in scientific research and higher education: the only way is ethics?

Nollett,

Eberl,

Fitzgibbon

et al. 2024

Res Involv Engagem

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Background Involving and engaging the public in scientific research and higher education is slowly becoming the norm for academic institutions in the United Kingdom and elsewhere. Driven by a wide range of stakeholders including regulators, funders, research policymakers and charities public involvement and public engagement are increasingly seen as essential in delivering open and transparent activity that is relevant and positively impacts on our society. It is obvious that any activities involving and engaging members of the public should be conducted safely and ethically. However, it is not clear whether conducting activities ethically means they require ethical approval from a research ethics committee. Main body Although there is some guidance available from government organisations (e.g. the UK Health Research Authority) to suggest ethical approval is not required for such activities, requests from funders and publishers to have ethical approval in place is commonplace in the authors’ experience. We explore this using case studies from our own institution. Conclusion We conclude that any public-facing activity with the purpose to systemically investigate knowledge, attitudes and experiences of members of the public as research and as human participants requires prior approval from an ethics committee. In contrast, engaging and involving members of the public and drawing on lived experience to inform aspects of research and teaching does not. However, lack of clarity around this distinction often results in the academic community seeking ethical approval ‘just in case’, leading to wasted time and resources and erecting unnecessary barriers for public involvement and public engagement. Instead, ethical issues and risks should be appropriately considered and mitigated by the relevant staff within their professional roles, be it academic or a professional service. Often this can involve following published guidelines and conducting an activity risk assessment, or similar. Moving forward, it is critical that academic funders and publishers acknowledge the distinction and agree on an accepted approach to avoid further exacerbating the problem.

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19 Launch of the public involvement in research impact toolkit

Abstract: safety), accessible both locally for palliative care teams to support service planning and bench-marking, and nationally for policy and strategy judgements.

Cited by 2 publications

References 1 publication

Patient and public involvement in cancer-associated thrombosis research: necessary or glorified tokenism?

Patient and public involvement in cancer-associated thrombosis research: necessary or glorified tokenism?

Public involvement and engagement in scientific research and higher education: the only way is ethics?

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