The Gothenburg person-centred care (GPCC) model (1–4) promotes genuine patient involvement in direct care settings through three routine steps:
1. Active listening and narrative elicitation (initiating the partnership),
2. Shared decision-making and co-creation of a plan (safeguarding the partnership),
3. Documentation and continuity (implementing the partnership).

The GPCC model is based on Ricœur’s ethical standpoint that guides our practical actions (4,5) and one intellectual strength of this model is its universality as it allows the three routine steps to be transferred to organisational levels and multilevel governance.

This is especially interesting in the context of requests for increased patient and public involvement (PPI) initiatives in operative and strategic levels of healthcare systems (6). In such settings, patients or family carers can be involved by either representing themselves (as member of the public) or by representing an interest group (e.g., non-profit patient organisation). There is a plethora of frameworks for PPI (7–13), however, as Arnstein (13) pointed out in 1969, tokenistic practices are common, i.e. making only a symbolic effort to include citizens to give the appearance of valuing their perspectives. This is still commonly observed in PPI initiatives (14,15). Genuine PPI, however, aims for an honest recognition and integration of patients' and family carers’ unique expertise and knowledge, as well as full transparency in decision-making.

Here, we propose that through a person-centred approach, tokenism could be reduced if not eliminated by guiding our practical actions. We suggest following the three routine steps of the GPCC model (mentioned above) and striving for person-centredness in PPI initiatives. In practice, this is characterized by actively listening to each other’s perspectives, developing a shared narrative, striving for shared and transparent decision-making, co-creation and documentation of plans to follow up continuously. In our presentation, we will elaborate on practical examples and best practices.

1. Ekman I, Swedberg K, Taft C, Lindseth A, Norberg A, Brink E, et al. Person-Centered Care — Ready for Prime Time. Eur J Cardiovasc Nurs. 2011 Dec;10(4):248–51.

2. Britten N, Ekman I, Naldemirci Ö, Javinger M, Hedman H, Wolf A. Learning from Gothenburg model of person centred healthcare. 2020 Sep 1 [cited 2024 Jan 2]; Available from: https://ore.exeter.ac.uk/repository/handle/10871/123197

3. Ekman I, Ebrahimi Z, Olaya Contreras P. Person-centred care: looking back, looking forward. Eur J Cardiovasc Nurs. 2021 Feb 1;20(2):93–5.

4. Ekman I. Practising the ethics of person-centred care balancing ethical conviction and moral obligations. Nurs Philos. 2022;23(3):e12382.

5. Ricoeur P. Oneself as Another [Internet]. Chicago, IL: University of Chicago Press; 1995 [cited 2023 Nov 23]. 374 p. Available from: https://press.uchicago.edu/ucp/books/book/chicago/O/bo3647498.html

6. WHO. Declaration of Alma-Ata International Conference on Primary Health Care, Alma-Ata, USSR, 6–12 September 1978.

7. Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, et al. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot. Health Expect. 2019;22(4):785–801.

8. Bergholtz J, Wolf A, Crine V, Cleeve H, Santana MJ, Björkman I. Patient and public involvement in healthcare: A systematic mapping review of systematic reviews - Identification of current research and possible directions for future research. Submitted BMJ Open.

9. IAP2 Australasia [Internet]. [cited 2023 Oct 24]. IAP2 Public Participation Spectrum. Available from: https://iap2.org.au/resources/spectrum/

10. Popay J. Community engagement for health improvement: questions of definition, outcomes and evaluation. A background paper prepared for NICE. National Institute for Clinical Excellence. NICE, National Insitute for Clinical Excellence; 2006.

11. Agency for Toxic Substances and Disease Registry (ATSDR), Clinical and Translational Science Awards Consortium. Principles of Community Engagement [Internet]. 2022 [cited 2023 Oct 24]. Available from: https://www.atsdr.cdc.gov/communityengagement/

12. World Health Organization. Regional Office for Europe. Community participation in local health and sustainable development: approaches and techniques [Internet]. World Health Organization. Regional Office for Europe; 2002 [cited 2023 Apr 6]. 93 p. Available from: https://apps.who.int/iris/handle/10665/107341

13. Arnstein SR. A Ladder Of Citizen Participation. J Am Inst Plann. 1969 Jul 1;35(4):216–24.

14. Majid U. The Dimensions of Tokenism in Patient and Family Engagement: A Concept Analysis of the Literature. J Patient Exp. 2020 Dec;7(6):1610–20.

15. Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Fam Pract. 2017 Jun 1;34(3):290–5.