More than a method: trusting relationships, productive tensions, and two-way learning as mechanisms of authentic co-production
Tóm tắt
Knowledge mobilisation requires the effective elicitation and blending of different types of knowledge or ways of knowing, to produce hybrid knowledge outputs that are valuable to both knowledge producers (researchers) and knowledge users (health care stakeholders). Patients and service users are a neglected user group, and there is a need for transparent reporting and critical review of methods used to co-produce knowledge with patients. This study aimed to explore the potential of participatory codesign methods as a mechanism of supporting knowledge sharing, and to evaluate this from the perspective of both researchers and patients. A knowledge mobilisation research project using participatory codesign workshops to explore patient involvement in using health data to improve services. To evaluate involvement in the project, multiple qualitative data sources were collected throughout, including a survey informed by the Generic Learning Outcomes framework, an evaluation focus group, and field notes. Analysis was a collective dialogic reflection on project processes and impacts, including comparing and contrasting the key issues from the researcher and contributor perspectives. Authentic involvement was seen as the result of “space to talk” and “space to change”. "Space to talk" refers to creating space for shared dialogue, including space for tension and disagreement, and recognising contributor and researcher expertise as equally valuable to the discussion. ‘Space to change’ refers to space to adapt in response to contributor feedback. These were partly facilitated by the use of codesign methods which emphasise visual and iterative working, but contributors emphasised that relational openness was more crucial, and that this needed to apply to the study overall (specifically, how contributors were reimbursed as a demonstration of how their input was valued) to build trust, not just to processes within the workshops. Specific methods used within involvement are only one component of effective involvement practice. The relationship between researcher and contributors, and particularly researcher willingness to change their approach in response to feedback, were considered most important by contributors. Productive tension was emphasised as a key mechanism in leading to genuinely hybrid outputs that combined contributor insight and experience with academic knowledge and understanding. We conducted a study exploring how patients could be involved in improving services using health data. This paper reports on the evaluation of that study. We collected different kinds of feedback throughout, including a survey of impacts on contributors, a focus group to reflect on what worked well and what could be done better, and also sharing thoughts throughout the study itself. We analysed this feedback together, to make sure that both contributor and researcher perspectives were considered equally. We found that the successful co-production that happened during the study was the result of having ‘space to talk’ and ‘space to change’. Space to talk that meant we all shared our views and recognised each other as experts bringing equally important knowledge. Space to change meant that we acted on the knowledge shared, to change both the study and to change how we worked together. We found that these themes occurred at multiple levels. They were partly achieved by the specific participatory codesign methods that were used, but equally or perhaps more important was the trusting relationship between the researcher and contributors, including openness to explore tensions. The wider systems that supported involvement, in this case the financial reimbursement for contributor time, were also as important to this as the things that happened within the study itself. We recommend that future work creates ‘space to talk’ and ‘space to change’, and reports openly on how both contributors and researchers are affected by this.
Tài liệu tham khảo
Grimshaw JM, Eccles MP, Lavis JN, Hill SJ, Squires JE. Knowledge translation of research findings. Implement Sci. 2012;7(1):50. https://doi.org/10.1186/1748-5908-7-50.
Walshe K, Davies HT. Health research, development and innovation in England from 1988 to 2013: from research production to knowledge mobilization. J Health Serv Res Policy. 2013 Oct 1;18(3_suppl):1–12.
Greenhalgh T, Wieringa S. Is it time to drop the ‘knowledge translation’ metaphor? A critical literature review. J R Soc Med. 2011;104(12):501–9. https://doi.org/10.1258/jrsm.2011.110285.
Rycroft-Malone J, Seers K, Titchen A, Harvey G, Kitson A, McCormack B. What counts as evidence in evidence-based practice? J Adv Nurs. 2004;47(1):81–90. https://doi.org/10.1111/j.1365-2648.2004.03068.x.
Van De Ven AH, Johnson PE. Knowledge for theory and practice. Acad Manag Rev. 2006;31(4):802–21.
Burton C, Rycroft-Malone J. An untapped resource: patient and public involvement in implementation. Int J Health Policy Manag. 2015;4(12):845–7. https://doi.org/10.15171/ijhpm.2015.150.
Ward PR, Thompson J, Barber R, Armitage CJ, Boote JD, Cooper CL, et al. Critical perspectives on ‘consumer involvement’ in health research: epistemological dissonance and the know-do gap. J Sociol. 2010;46(1):63–82. https://doi.org/10.1177/1440783309351771.
Gibson A, Britten N, Lynch J. Theoretical directions for an emancipatory concept of patient and public involvement. Health (London). 2012;16(5):531–47. https://doi.org/10.1177/1363459312438563.
Renedo A, Komporozos-Athanasiou A, Marston C. Experience as evidence: the dialogic construction of health professional knowledge through patient involvement. Sociology. 2018;52(4):778–95. https://doi.org/10.1177/0038038516682457.
Renedo A, Marston CA, Spyridonidis D, Barlow J. Patient and public involvement in healthcare quality improvement: how organizations can help patients and professionals to collaborate. Public Manag Rev. 2015;17(1):17–34. https://doi.org/10.1080/14719037.2014.881535.
Abma TA, Pittens CACM, Visse M, Elberse JE, Broerse JEW. Patient involvement in research programming and implementation: a responsive evaluation of the dialogue model for research agenda setting. Health Expect. 2015;18(6):2449–64. https://doi.org/10.1111/hex.12213.
Matthews R, Papoulias C (Stan). Toward Co-productive Learning? The Exchange Network as Experimental Space. Front Sociol [Internet]. 2019 [cited 2019 Aug 8];4. Available from: https://www.frontiersin.org/articles/https://doi.org/10.3389/fsoc.2019.00036/full
Abma TA, Broerse JEW. Patient participation as dialogue: setting research agendas. Health Expect. 2010;13(2):160–73. https://doi.org/10.1111/j.1369-7625.2009.00549.x.
de Brún T, O’Reilly-de Brún M, Van Weel-Baumgarten E, Burns N, Dowrick C, Lionis C, et al. Using Participatory Learning & Action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: an analysis of stakeholders’ experiences. Research Involvement and Engagement. 2017 Dec 6;3(1):28.
Filipe A, Renedo A, Marston C. The co-production of what? Knowledge, values, and social relations in health care. PLoS Biol. 2017;15(5):e2001403. https://doi.org/10.1371/journal.pbio.2001403.
Tierney E, McEvoy R, Brún MO, Brún T, Okonkwo E, Rooney M, et al. A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory. Health Expect. 2016;19(3):501–15. https://doi.org/10.1111/hex.12237.
Clemensen J, Larsen SB, Kyng M, Kirkevold M. Participatory Design in Health Sciences: using cooperative experimental methods in developing health services and computer technology. Qual Health Res. 2007;17(1):122–30. https://doi.org/10.1177/1049732306293664.
Knowles S, Hays R, Senra H, Bower P, Locock L, Protheroe J, et al. Empowering people to help speak up about safety in primary care: using codesign to involve patients and professionals in developing new interventions for patients with multimorbidity. Health Expect. 2018;21(2):539–48. https://doi.org/10.1111/hex.12648.
Papoulias C. Showing the unsayable: participatory visual approaches and the constitution of ‘patient experience’ in healthcare quality improvement. Health Care Anal. 2018;26(2):171–88. https://doi.org/10.1007/s10728-017-0349-3.
Langley J, Wolstenholme D, Cooke J. ‘Collective making’ as knowledge mobilisation: the contribution of participatory design in the co-creation of knowledge in healthcare. BMC Health Services Research. 2018 Jul 25;18(1):585.
Gibson A, Welsman J, Britten N. Evaluating patient and public involvement in health research: from theoretical model to practical workshop. Health Expect. 2017;20(5):826–35. https://doi.org/10.1111/hex.12486.
Morrison C, Dearden A. Beyond tokenistic participation: using representational artefacts to enable meaningful public participation in health service design. Health Policy. 2013;112(3):179–86. https://doi.org/10.1016/j.healthpol.2013.05.008.
Crocker JC, Boylan A-M, Bostock J, Locock L. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expect. 2017;20(3):519–28. https://doi.org/10.1111/hex.12479.
Friedman C, Rubin J, Brown J, Buntin M, Corn M, Etheredge L, et al. Toward a science of learning systems: a research agenda for the high-functioning Learning Health System. Journal of the American Medical Informatics Association. 2014 Oct 23;amiajnl-2014-002977.
Institute of Medicine (US). Patients Charting the Course: Citizen Engagement and the Learning Health System: Workshop Summary [Internet]. Olsen L, Saunders RS, McGinnis JM, editors. Washington (DC): National Academies Press (US); 2011 [Cited 2016 Sep 8]. (The National Academies Collection: Reports funded by National Institutes of Health). Available from: http://www.ncbi.nlm.nih.gov/books/NBK91496/
Blomquist AAsa, Arvola M. Personas in action: ethnography in an interaction design team. In: Proceedings of the second Nordic conference on Human-computer interaction [Internet]. ACM; 2002 [cited 2014 Jan 29]. p. 197–200. Available from: http://dl.acm.org/citation.cfm?id=572044
Conte KP, Davidson S. Using a ‘rich picture’ to facilitate systems thinking in research coproduction. Health Res Policy Sys. 2020;18(1):14. https://doi.org/10.1186/s12961-019-0514-2.
Borst RAJ, Kok MO, O’Shea AJ, Pokhrel S, Jones TH, Boaz A. Envisioning and shaping translation of knowledge into action: a comparative case-study of stakeholder engagement in the development of a European tobacco control tool. Health Policy. 2019;123(10):917–23. https://doi.org/10.1016/j.healthpol.2019.07.012.
Arts Council UK. Generic Learning Outcomes: An improvement framework for the Arts and Culture sector. https://www.artscouncil.org.uk/measuring-outcomes/generic-learning-outcomes.
Aitken M, Cunningham-Burley S, Pagliari C. Moving from trust to trustworthiness: experiences of public engagement in the Scottish health informatics Programme. Sci Public Policy. 2016;43(5):713–23. https://doi.org/10.1093/scipol/scv075.
Maguire K, Britten N. ‘You’re there because you are unprofessional’: patient and public involvement as liminal knowledge spaces. Sociol Health Illness. 2018;40(3):463–77. https://doi.org/10.1111/1467-9566.12655.
Bryant W, Parsonage J, Tibbs A, Andrews C, Clark J, Franco L. Meeting in the mist: key considerations in a collaborative research partnership with people with mental health issues. Work. 2012;43(1):23–31. https://doi.org/10.3233/WOR-2012-1444.
Snape D, Kirkham J, Preston J, Popay J, Britten N, Collins M, et al. Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study. BMJ Open. 2014;4(1):e004217. https://doi.org/10.1136/bmjopen-2013-004217.
Farr M. Power dynamics and collaborative mechanisms in co-production and co-design processes. Crit Soc Policy. 2018;38(4):623–44. https://doi.org/10.1177/0261018317747444.
Whyte T. Brave spaces in mad studies [internet]. 2020. Available from: https://twitter.com/tamar_whyte/status/1297920882892038144
Collins S, Brueton R, Graham TG, Organ S, Strother A, West SE, et al. Parenting science gang: radical co-creation of research projects led by parents of young children. Res Involve Engage. 2020;6(1):9. https://doi.org/10.1186/s40900-020-0181-z.
Madden M, Morris S, Ogden M, Lewis D, Stewart D, McCambridge J. Producing co-production: Reflections on the development of a complex intervention. Health Expectations [Internet]. 2020 31 [cited 2020 Apr 27];n/a(n/a). Available from: https://onlinelibrary.wiley.com/doi/full/https://doi.org/10.1111/hex.13046
Green G, Johns T. Exploring the Relationship (and Power Dynamic) Between Researchers and Public Partners Working Together in Applied Health Research Teams. Front Sociol [Internet]. 2019 [cited 2019 Aug 8];4. Available from: https://www.frontiersin.org/articles/https://doi.org/10.3389/fsoc.2019.00020/full
Clarke J, Waring J, Timmons S. The challenge of inclusive coproduction: the importance of situated rituals and emotional inclusivity in the coproduction of health research projects. Soc Policy Admin. 2019;53(2):233–48. https://doi.org/10.1111/spol.12459.
Richards DP, Jordan I, Strain K, Press Z. Patient partner compensation in research and health care: the patient perspective on why and how. Patient Exper J. 2018;5(3):6–12. https://doi.org/10.35680/2372-0247.1334.
Wechsler AM. Overcoming the Venn diagram: Learning to be a co-passionate navigator in community-based participatory research. Research for All [Internet]. 2017 1 [cited 2020 Nov 13]; Available from: https://www.scienceopen.com/hosted-document?doi=https://doi.org/10.18546/RFA.01.1.12
Staley K, Cockcroft E, Shelly A, Liabo K. ‘What can I do that will most help researchers?’ A different approach to training the public at the start of their involvement in research. Research Involvement and Engagement. 2019;5(1).
Staley K, Barron D. Learning as an outcome of involvement in research: what are the implications for practice, reporting and evaluation? Research Involvement and Engagement. 2019;5(1).
Cook T. The purpose of mess in action research: building rigour though a messy turn. Educ Action Res. 2009;17(2):277–91. https://doi.org/10.1080/09650790902914241.
Abma TA, Cook T, Rämgård M, Kleba E, Harris J, Wallerstein N. Social impact of participatory health research: collaborative non-linear processes of knowledge mobilization. Educ Action Res. 2017;25(4):489–505. https://doi.org/10.1080/09650792.2017.1329092.
Cockcroft EJ, Britten N, Long L, Liabo K. How is knowledge shared in public involvement? A qualitative study of involvement in a health technology assessment. Health Expectations. 2019;
Staley K. Changing what researchers ‘think and do’: is this how involvement impacts on research? Research for all. 2017;
Boylan A, Locock L, Thompson R, Staniszewska S. “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. 2019;
Russell J, Fudge N, Greenhalgh T. The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it? Res Involve Engage. 2020;6(1):63. https://doi.org/10.1186/s40900-020-00239-w.