Series: Public engagement with research. Part 3: Sharing power and building trust through partnering with communities in primary care research

References

• Blackburn S, Clinch M, de Wit M, et al. Series: public engagement with research. Part 1: the fundamentals of public engagement with research. Eur J Gen Pract. 2023;29(1):1.
   Web of Science ®Google Scholar
• Haugaard M. The four dimensions of power: conflict and democracy. J Political Power. 2021;14(1):153–8. doi: 10.1080/2158379X.2021.1878411.
   Web of Science ®Google Scholar
• Madden M, Speed E. Beware zombies and unicorns: toward critical patient and public involvement in health research in a neoliberal context. Front Sociol. 2017;2(7). doi: 10.3389/fsoc.2017.00007.
   Google Scholar
• Arnstein SR. A ladder of citizen participation. J Am Plan Assoc. 1969;35(4):216–224. doi: 10.1080/01944366908977225.
   Web of Science ®Google Scholar
• Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond arnstein. Health Policy. 2006;76(2):156–168. doi: 10.1016/j.healthpol.2005.05.008.
   PubMed Web of Science ®Google Scholar
• Gaventa J. Levels, spaces and forms of power. In: Berenskoetter F, Williams M, editors. Power in world politics. Abingdon: Routledge; 2007. p. 204–224.
   Google Scholar
• Malpass A, Breel A, Stubbs J, et al. Create to collaborate: using creative activity and participatory performance in online workshops to build collaborative research relationships. Res Involv Engagem. 2023;9(1):111. doi: 10.1186/s40900-023-00512-8.
   PubMedGoogle Scholar
• Williams O, Sarre S, Papoulias SC, et al. Lost in the shadows: reflections on the dark side of co-production. Health Res Policy Syst. 2020;18(1):43. doi: 10.1186/s12961-020-00558-0.
   PubMed Web of Science ®Google Scholar
• Farr M. Power dynamics and collaborative mechanisms in co-production and co-design processes. Crit Soc Policy. 2018;38(4):623–644. doi: 10.1177/0261018317747444.
   Web of Science ®Google Scholar
• Moll S, Wyndham-West M, Mulvale G, et al. Are you really doing ‘codesign’? Critical reflections when working with vulnerable populations. BMJ Open. 2020;10(11):e038339. doi: 10.1136/bmjopen-2020-038339.
   PubMed Web of Science ®Google Scholar
• Armstrong A, Flynn E, Salt K, et al. Trust and temporality in participatory research. Qual Res. 2022;23(4):1000–1021. doi: 10.1177/14687941211065163.
   Web of Science ®Google Scholar
• Batalden P. Getting more health from healthcare: quality improvement must acknowledge patient coproduction—an essay by Paul Batalden. BMJ. 2018;362:k3617. doi: 10.1136/bmj.k3617.
   Google Scholar
• Mulvale G, Green J, Miatello A, et al. Finding harmony within dissonance: engaging patients, family/caregivers and service providers in research to fundamentally restructure relationships through integrative dynamics. Health Expect. 2021;24 Suppl 1(Suppl 1):147–160. doi: 10.1111/hex.13063.
   PubMedGoogle Scholar
• McCabe C, Round J. Hard choices: reflections from the tomb of the unknown patient. Healthc Manage Forum. 2019;32(6):288–292. doi: 10.1177/0840470419871319.
   PubMedGoogle Scholar
• Massod Y, Alverez Nishio A, Starling B, et al. Series: public engagement with research. Part 2: working together with minoritised communities inclusively in health research to help address inequalities. Eur J Gen Pract. 2024 (In Press).
   Web of Science ®Google Scholar
• McGeown H, Potter L, Stone T, et al. Trauma-informed co-production: collaborating and combining expertise to improve access to primary care with women with complex needs. Health Expect. 2023;26(5):1895–1914. doi: 10.1111/hex.13795.
   PubMedGoogle Scholar
• Codsi M, Karazivan P, Rouly G, et al. Changing relationships: how does patient involvement transform professional identity? An ethnographic study. BMJ Open. 2021;11(7):e045520. doi: 10.1136/bmjopen-2020-045520.
   PubMed Web of Science ®Google Scholar
• Chambers R. The origins and practice of participatory rural appraisal. World Dev. 1994;22(7):953–969. doi: 10.1016/0305-750X(94)90141-4.
   Web of Science ®Google Scholar
• Rolbiecki AJ, LeMaster JW. Photovoice in primary care settings: a flexible tool for fostering patient-centred care and social action. Fam Pract. 2021;38(6):855–858. doi: 10.1093/fampra/cmab061.
   PubMed Web of Science ®Google Scholar
• O'Donnell P, Tierney E, O'Carroll A, et al. Exploring levers and barriers to accessing primary care for marginalised groups and identifying their priorities for primary care provision: a participatory learning and action research study. Int J Equity Health. 2016;15(1):197. doi: 10.1186/s12939-016-0487-5.
   PubMedGoogle Scholar
• de Brún T, O'Reilly-de Brún M, Van Weel-Baumgarten E, et al. Using participatory learning & action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: an analysis of stakeholders’ experiences. Res Involv Engagem. 2017;3(1):28. (doi: 10.1186/s40900-017-0077-8.
   PubMedGoogle Scholar
• International Collaboration for Participatory Health Research. What is Participatory Health Research? Berlin: International Collaboration for Participatory Health Research; 2013. [cited 2023 August 9]. Available from: http://www.icphr.org/uploads/2/0/3/9/20399575/ichpr_position_paper_1_defintion_-_version_may_2013.pdf.
   Google Scholar
• Jagosh J, Macaulay AC, Pluye P, et al. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 2012;90(2):311–346. doi: 10.1111/j.1468-0009.2012.00665.x.
   PubMed Web of Science ®Google Scholar
• Pain R, Whitman G, Milledge D. Participatory Action Research Toolkit. Durham, UK: Durham University & Lune Rivers Trust; 2011. [cited 2023 August 9]. Available from: http://communitylearningpartnership.org/wp-content/uploads/2017/01/PARtoolkit.pdf.
   Google Scholar
• Farr M, Davies R, Davies P, et al. A map of resources for co-producing research in health and social care. Bristol: National Institute for Health Research (NIHR) ARC West and People in Health West of England 2021. [cited 2023 August 9]. Available from: http://bit.ly/CoProResources.
   Google Scholar
• Tierney S, Dawson S, Boylan A-M, et al. Broadening diversity through creative involvement to identify research priorities. Res Involv Engagem. 2021;7(1):3. doi: 10.1186/s40900-020-00244-z.
   PubMedGoogle Scholar
• The James Lind Priority Setting Partnership UK. Crown; 2023. [cited 2023 November 28]. Available from: https://www.jla.nihr.ac.uk/.
   Google Scholar
• Salsberg J, Macaulay AC, Parry D. Guide to integrated knowledge translation research: researcher and knowledge-user collaboration in health research. In: Graham ID, Tetroe JM, Pearson A, editors. Turning knowledge into action: practical guidance on how to do integrated knowledge translation research. Adelaide: Wolters Kluwer/Lippincott Williams & Wilkins; 2014.
   Google Scholar
• Potter L, Stone T, Group BG, et al. Improving access to general practice for and with people with severe and multiple disadvantage. Br J Gen Pract. 2023. doi: 10.3399/BJGP.2023.0244.
   Web of Science ®Google Scholar
• Haesebaert J, Samson I, Lee-Gosselin H, et al. “They heard our voice!” patient engagement councils in community-based primary care practices: a participatory action research pilot study. Res Involv Engagem. 2020;6(1):54. doi: 10.1186/s40900-020-00232-3.
   PubMedGoogle Scholar
• Rådet för styrning med kunskap [The Council for Governance with Knowledge]. Statlig styrning med kunskap för hälso- och sjukvård och socialtjänst. Redogörelse för arbetet inom Rådet för styrning med kunskap och Huvudmannagruppen under 2017 [State governance with knowledge for healthcare and social services. Account of the work within the Council for governance with knowledge and the Principal Group during 2017]. 2018. Swedish. [cited 2023 August 9]. Available from: https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/dokument-webb/ovrigt/radet-for-styrning-med-kunskap-arsrapport-2021.pdf.
   Google Scholar
• The Swedish Agency for Public management. Utvärdering av en samlad styrning med kunskap för hälso- och sjukvård och socialtjänst [Evaluation of an integrated governance with knowledge for healthcare and social services]. 2018. Swedish. [cited 2023 August 9]. Available from: https://www.statskontoret.se/publicerat/publikationer/publikationer-2018/utvardering-av-en-samlad-styrning-med-kunskap-for-halso–och-sjukvard-och-socialtjanst.-slutrapport/.
   Google Scholar