Negotiating pace, focus and identities: Patient/public involvement/engagement in a palliative care study.
co‐production
negotiation
palliative care
patient/public involvement and engagement
power
Journal
Sociology of health & illness
ISSN: 1467-9566
Titre abrégé: Sociol Health Illn
Pays: England
ID NLM: 8205036
Informations de publication
Date de publication:
08 May 2024
08 May 2024
Historique:
received:
06
11
2023
accepted:
21
03
2024
medline:
9
5
2024
pubmed:
9
5
2024
entrez:
9
5
2024
Statut:
aheadofprint
Résumé
Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co-authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken-up by all team members, in so doing a self-governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co-production. Identities and positions were porous; the simplistic division of 'academic' and 'PPIE' did not stand up to scrutiny, with an increasing blurring of boundaries as people's experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team.
Identifiants
pubmed: 38720523
doi: 10.1111/1467-9566.13785
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : National Institute of Health Research
ID : NIHR128799
Informations de copyright
© 2024 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for the Sociology of Health & Illness.
Références
Aas, S. N., Distefano, M. B., Pettersen, I., Gravrok, B., Nordvoll, L. Y., Bjaastad, J. F., & Grimsgaard, S. (2023). Patient and public involvement in health research in Norway: A survey among researchers and patient organisations. Research Involvement and Engagement, 9(1), 48. https://doi.org/10.1186/s40900‐023‐00458‐x
Barnes, C. (2019). Understanding the social model of disability: Past, present and future. In N. Watson, A. Roulstone, & C. Thomas, Routledge handbook of disability studies (pp. 14–31). Routledge.
Béland, S., Lambert, M., Delahunty‐Pike, A., Howse, D., Schwarz, C., Chouinard, M. C., Aubrey‐Bassler, K., Burge, F., Doucet, S., Danish, A., Dumont‐Samson, O., Bisson, M., Luke, A., Macdonald, M., Gaudreau, A., Porter, J., Rubenstein, D., Sabourin, V., Scott, C., … Hudon, C. (2022). Patient and researcher experiences of patient engagement in primary care health care research: A participatory qualitative study. Health Expectations, 25(5), 2365–2376. https://doi.org/10.1111/hex.13542
Bennett, H., & Brunner, R. (2022). Political and ethical dilemmas in multi‐agency participatory research: The role of the buffer zone. Methodological Innovations, 15(3), 387–399. https://doi.org/10.1177/20597991221129775
Beresford, P. (2020). PPI or user involvement: Taking stock from a service user perspective in the twenty first century. Research Involvement and Engagement, 6(1), 1–5. https://doi.org/10.1186/s40900‐020‐00211‐8
Beresford, P., & Rose, D. (2009). Background. In A. Sweeney, P. Beresford, M. Faulkner, M. Nettle, & D. Rose (Eds.), This is survivor research (pp. 11–21). PCSS Books.
Beresford, P., & Russo, J. (2016). Supporting the sustainability of mad studies and preventing its co‐option. Disability & Society, 32(2), 270–274.
Boaz, A., Biri, D., & McKevitt, C. (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. https://doi.org/10.1111/hex.12295
Boaz, A., Chambers, M., & Stuttaford, M. (2014). Public participation: More than a method? Comment on “Harnessing the potential to quantify public preferences for healthcare priorities through citizens’ juries”. International Journal of Health Policy and Management, 3(5), 291–293. https://doi.org/10.15171/ijhpm.2014.102
Boylan, A. M., Locock, L., Thomson, R., & Staniszewska, S. (2019). “About sixty per cent I want to do it”: Health researchers' attitudes to, and experiences of, patient and public involvement (PPI) – A qualitative interview study. Health Expectations, 22(4), 721–730. https://doi.org/10.1111/hex.12883
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Burgher, T., Shepherd, V., & Nollett, C. (2023). Effective approaches to public involvement in care home research: A systematic review and narrative synthesis. Research Involvement and Engagement, 9(1), 38. https://doi.org/10.1186/s40900‐023‐00453‐2
Burke, N. N., Stewart, D., Tierney, T., Worrall, A., Smith, M., Elliott, J., Beecher, C., Devane, D., & Biesty, L. (2023). Sharing space at the research table: Exploring public and patient involvement in a methodology priority setting partnership. Research Involvement and Engagement, 9(1), 29. https://doi.org/10.1186/s40900‐023‐00438‐1
Carroll, A. (2020). An autoethnography of death and dying in Northern Ireland. Journal of Integrated Care, 28(4), 327–336. https://doi.org/10.1108/jica‐02‐2020‐0007
Clark, M., & Cornes, M. (2023). Citizen science as a framework for improving the science‐society interface in long‐term care research. Journal of Long‐Term Care, 92–99. https://doi.org/10.31389/jltc.142
Condon, A., Johns, L., & Chester, P. (2021). Utilizing an autoethnographic case study approach to explore patient‐centered care and its principles in an oncology and palliative care setting. Illness, Crisis, and Loss, 29(3), 241–256. https://doi.org/10.1177/1054137318800862
Cornwall, A. (2004). Spaces for transformation? Reflections on issues of power and difference in participation development. In S. Hickey & G. Mohan (Eds.), Participation: From tyranny to transformation: Exploring new approaches to (pp. 75–91). Zed Books.
Crawford, M. J., Rutter, D., Manley, C., Weaver, T., Bhui, K., Fulop, N., & Tyrer, P. (2002). Systematic review of involving patients in the planning and development of health care. BMJ, 325(7375), 1263. https://doi.org/10.1136/bmj.325.7375.1263
Daly Lynn, J., Washbrook, M., Ryan, A., McCormack, B., & Martin, S. (2021). Partnering with older people as peer researchers. Health Expectations, 24(5), 1879–1889. https://doi.org/10.1111/hex.13331
Faulkner, A., & Thompson, R. (2023). Uncovering the emotional labour of involvement and co‐production in mental health research. Disability & Society, 38(4), 537–560. https://doi.org/10.1080/09687599.2021.1930519
Foucault, M. (1966). The order of things: An archaeology of the human sciences. Routledge.
Foucault, M. (1977). Discipline and punish: The birth of the prison. Vintage books.
Foucault, M. (1997). Ethics: Subjectivity and truth. Essential works of Michel Foucault, 1954–1984. New Press.
Foucault, M. (2000). The birth of the clinic. Routledge.
Foucault, M. (2002). Archaeology of knowledge. Taylor & Francis Group.
Foucault, M. (2007). Security, territory, population. Lectures at the colleage De France, 1977–78. Palgrave Macmillan.
Gilchrist, K., Iqbal, S., & Vindrola‐Padros, C. (2022). The role of patient and public involvement in rapid qualitative studies: Can we carry out meaningful PPIE with time pressures? Research Involvement and Engagement, 8(1), 67. https://doi.org/10.1186/s40900‐022‐00402‐5
Glenn, J. G. (2019). Foucault and post‐financial crises: Governmentality, discipline and resistance (1st ed.). Palgrave Macmillan.
Green, G., & Johns, T. (2019). Exploring the relationship (and power dynamic) between researchers and public partners working together in applied health research teams. Frontiers in Sociology, 4, 20. https://doi.org/10.3389/fsoc.2019.00020
Haarmans, M., Nazroo, J., Kapadia, D., Maxwell, C., Osahan, S., Edant, J., Grant‐Rowles, J., Motala, Z., & Rhodes, J. (2022). The practice of participatory action research: Complicity, power and prestige in dialogue with the ‘racialised mad’. Sociology of Health & Illness, 44(Suppl 1), 106–123. https://doi.org/10.1111/1467‐9566.13517
Harrison, J. D., Auerbach, A. D., Anderson, W., Fagan, M., Carnie, M., Hanson, C., Banta, J., Symczak, G., Robinson, E., Schnipper, J., Wong, C., & Weiss, R. (2019). Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities. Health Expectations, 22(3), 307–316. https://doi.org/10.1111/hex.12873
Heckert, A., Forsythe, L. P., Carman, K. L., Frank, L., Hemphill, R., Elstad, E. A., Esmail, L., & Lesch, J. K. (2020). Researchers, patients, and other stakeholders’ perspectives on challenges to and strategies for engagement. Research Involvement and Engagement, 6(1), 60. https://doi.org/10.1186/s40900‐020‐00227‐0
Henwood, F., Wyatt, S., Hart, A., & Smith, J. (2003). ‘Ignorance is bliss sometimes’: Constraints on the emergence of the ‘informed patient’ in the changing landscapes of health information. Sociology of Health & Illness, 25(6), 589–607. https://doi.org/10.1111/1467‐9566.00360
Hodge, S. (2005). Participation, discourse and power: A case study in service user involvement. Critical Social Policy, 25(2), 164–179. https://doi.org/10.1177/0261018305051324
Johnson, H., Davies, J. M., Leniz, J., Chukwusa, E., Markham, S., & Sleeman, K. E. (2021). Opportunities for public involvement in big data research in palliative and end‐of‐life care. Palliative Medicine, 35(9), 1724–1726. https://doi.org/10.1177/02692163211002101
Johnson, H., Ogden, M., Brighton, L., Etkind, S., Oluyase, A., Chukwusa, E., Yu, P., de Wolf‐Linder, S., Smith, P., Bailey, S., Koffman, J., & Evans, C. (2021). Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation. Palliative Medicine, 35(1), 151–160. https://doi.org/10.1177/0269216320956819
Knowles, S. E., Allen, D., Donnelly, A., Flynn, J., Gallacher, K., Lewis, A., McCorkle, G., Mistry, M., Walkington, P., & Drinkwater, J. (2021). More than a method: Trusting relationships, productive tensions, and two‐way learning as mechanisms of authentic co‐production. Research Involvement and Engagement, 7(1), 34. https://doi.org/10.1186/s40900‐021‐00262‐5
Li, T. M. (2007). Governmentality. Anthropologica, 49(2), 275–281.
Lignou, S., Capitao, L., Hamer‐Hunt, J. M., & Singh, I. (2019). Co‐Production: An ethical model for mental health research? The American Journal of Bioethics, 19(8), 49–51. https://doi.org/10.1080/15265161.2019.1619877
Macgregor, A., McCormack, B., Spilsbury, K., Hockley, J., Rutherford, A., Ogden, M., Soulsby, I. M. M., Hanratty, B., & Forbat, L. (2022). Supporting care home residents in the last year of life through ‘Needs Rounds’: Development of a pre‐implementation programme theory through a rapid collaborative online approach. Frontiers in Health Services, 2. https://doi.org/10.3389/frhs.2022.1019602
Madsen, O. J. (2014). Governmentality. In T. Teo (Ed.), Encyclopedia of critical psychology (pp. 814–816). Springer New York.
Maguire, K., & Britten, N. (2018). ‘You're there because you are unprofessional’: Patient and public involvement as liminal knowledge spaces. Sociology of Health & Illness, 40(3), 463–477. https://doi.org/10.1111/1467‐9566.12655
McIntosh, I. A. N., & Wright, S. (2019). Exploring what the notion of ‘lived experience’ offers for social policy analysis. Journal of Social Policy, 48(3), 449–467. https://doi.org/10.1017/s0047279418000570
McLaughlin, J., Scambler, S., & Thomas, G. (2023). Introduction to special issue: New dialogues between medical sociology and disability studies. Sociology of Health & Illness, 45(6), 1133–1145. https://doi.org/10.1111/1467‐9566.13652
NIHR. (2018). National standards for public involvement in research. Retrieved May 3, 2024, from https://www.invo.org.uk/wp‐content/uploads/2019/11/UK‐standards‐for‐public‐involvement‐v6.pdf
Pearce, C. (2021). The complexities of developing equal relationships in patient and public involvement in health research. Social Theory & Health, 19(4), 362–379. https://doi.org/10.1057/s41285‐020‐00142‐0
Perkins, P., Barclay, S., & Booth, S. (2007). What are patients' priorities for palliative care research? Focus group study. Palliative Medicine, 21(3), 219–225. https://doi.org/10.1177/0269216307077353
Richards, D. P., Poirier, S., Mohabir, V., Proulx, L., Robins, S., & Smith, J. (2023). Reflections on patient engagement by patient partners: How it can go wrong. Research involvement and engagement. Research Involvement and Engagement, 9(1), 41. https://doi.org/10.1186/s40900‐023‐00454‐1
Rose, D., & Kalathil, J. (2019). Power, privilege and knowledge: The untenable promise of co‐production in mental “health”. Frontiers in Sociology, 4. https://doi.org/10.3389/fsoc.2019.00057
Rose, N., & Miller, P. (2010). Political power beyond the state: Problematics of government. British Journal of Sociology, 61(s1), 271–303. https://doi.org/10.1111/j.1468‐4446.2009.01247.x
Solvang, I. M., & Juritzen, T. I. (2020). Between empowerment and discipline: Practicing contractualism in social work. Journal of Social Work, 20(3), 321–339. https://doi.org/10.1177/1468017318815326
Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., Altman, D. G., Moher, D., Barber, R., Denegri, S., Entwistle, A., Littlejohns, P., Morris, C., Suleman, R., Thomas, V., & Tysall, C. (2017). GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research. Research Involvement and Engagement, 3(1), 13. https://doi.org/10.1186/s40900‐017‐0062‐2
Ward, P. R., Thompson, J., Barber, R., Armitage, C. J., Boote, J. D., Cooper, C. L., & Jones, G. L. (2010). Critical perspectives on ‘consumer involvement’ in health research: Epistemological dissonance and the know‐do gap. Journal of Sociology, 46(1), 63–82. https://doi.org/10.1177/1440783309351771
Willis, P., Almack, K., Hafford‐Letchfield, T., Simpson, P., Billings, B., & Mall, N. (2018). Turning the co‐production corner: Methodological reflections from an action research project to promote LGBT inclusion in care homes for older people. International Journal of Environmental Research and Public Health, 15(4), 695. https://doi.org/10.3390/ijerph15040695
Wilsdon, J., Wynne, B., & Stilgoe, J. (2005). The public value of science: Or how to ensure that science really matters. Demos.