Are we at risk of commodifying lived experience in childhood disability research?

Abstract

Get full access to this article

View all access options for this article.

References

Arnstein

(1969) A ladder of citizen participation. Journal of the American Institute of Planners 35(4): 216–224.

Boaz

Biri

McKevitt

(2016) Rethinking the relationship between science and society: has there been a shift in attitudes to patient and public involvement and public engagement in science in the United Kingdom? Health Expectations 19(3): 592–601.

Boivin

Richards

Forsythe

, et al. (2018) Evaluating patient and public involvement in research. BMJ 363: k5147.

Buchanan

Peasgood

Easton

, et al. (2022) The Research Family Advisory Committee: the patient and family view of implementing a research-focused patient engagement strategy. Research Involvement and Engagement 8(1): 2.

Canadian Institute of Health Research (2018) Strategy for patient orientated research (SPOR). Available from https://cihr-irsc.gc.ca/e/41204.html (accessed 26 March 2024).

Crocker

Ricci-Cabello

Parker

, et al. (2018) Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. BMJ 363: k4738.

Crockett

Scott

Driedger

, et al. (2024) Characterizing research partnerships in child health research: a scoping review. Journal of Child Health Care 136.

Frank

Forsythe

Ellis

, et al. (2015) Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Quality of Life Research 24: 1033–1041.

Gibson

(2017) Evaluating patient and public involvement in health research: from theoretical model to practical workshop. Health Expectations 20(5): 826826–835835.

10.

Heath Research Authority/INVOLVE (2016) Impact of public involvement on the ethical aspects of research. Available at: https://s3.eu-west-2.amazonaws.com/www.hra.nhs.uk/media/documents/impact-public-involvement-ethical-aspects-research-updated-2016.pdf (accessed 26 March 2024).

11.

Hoekstra

Mrklas

Khan

, et al. (2020) A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches: a first step in synthesising the research partnership literature. Health Research Policy and Systems 18: 1–23.

12.

Komporozos-Athanasiou

Paylor

Mckevitt

(2022) Governing researchers through public involvement. Journal of Social Policy 51(2): 268–283.

13.

Manafo

Petermann

Mason-Lai

, et al. (2018) Patient engagement in Canada: a scoping review of the ‘how’and ‘what’of patient engagement in health research. Health Research Policy and Systems 16: 1–11.

14.

Morris

Shilling

McHugh

, et al. (2011) Why it is crucial to involve families in all stages of childhood disability research. Developmental Medicine and Child Neurology 53(8): 769–771.

15.

National Institute for Health Research (2021) Briefing note for researchers – pubic involvement in NHS, health and social care research. Available at: https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371 (accessed 26 March 2024).

16.

National Quality board (2022) Improving developed by the national quality board experience of care: a shared commitment for those working in health and care systems. Available from https://www.england.nhs.uk/publication/improving-experience-of-care-a-shared-commitment-for-those-working-in-health-and-care-systems/ (accessed 26 March 2024).

17.

NHS England (2022) Working in partnership with people and communities: statutory guidance. Available from https://www.england.nhs.uk/publication/improving-experience-of-care-a-shared-commitment-for-those-working-in-health-and-care-systems/ (accessed 26 March 2024).

18.

Patient Centred Outcomes Research Institute (2024) Engagement in research: foundational expectations for partnerships. Available at: https://www.pcori.org/sites/default/files/PCORI-Engagement-in-Research-Foundational-Expectations-for-Partnerships.pdf (accessed 26 March 2024).

19.

Russell

Fudge

Greenhalgh

(2020) The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it? Research Involvement and Engagement 6: 1–8.

20.

Smits

Van Meeteren

Klem

, et al. (2020) Designing a tool to support patient and public involvement in research projects: the involvement matrix. Research Involvement and Engagement 6: 1–7.

21.

Staniszewska

Brett

Simera

, et al. (2017) GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ 358: j3453.

22.

Thompson

Barber

Ward

, et al. (2009) Health researchers’ attitudes towards public involvement in health research. Health Expectations 12(2): 209–220.