Journal Article

Reducing tokenism in patient and public involvement by integrating the Gothenburg person-centred care framework, relational bridges and impact log – a co-produced position paper

Gyllensten, Hanna, Ekman, Inger, Wolf, Axel, Wallström, Sara, Björkman, Ida, Bergholtz, Jana, Forsgren, Emma, Öhlén, Joakim

2026

Overview

Background Patient and public involvement (PPI) is widely promoted in health research, care services and governance. It is increasingly framed as a matter of rights, dignity and accountability. Despite strong policy support, PPI remains conceptually diverse, unevenly implemented and persistently vulnerable to tokenism, with PPI contributors often reporting unclear influence and weak feedback. Recent literature has highlighted the need for stronger ethical anchoring of PPI beyond standards, frameworks and reporting requirements. Main argument This position paper explores how tokenism in PPI can be reduced by adapting established steps from the Gothenburg person-centred care (PCC) framework, grounded in Paul Ricœur’s “little ethics”, to involvement practices beyond the clinical encounter. We propose person-centred PPI (PC-PPI) as a practice-oriented approach comprising three core collaborative steps: (1) Initiating the partnership through shared narrative, (2) Working the partnership through explicit negotiation of decision rights, and (3) Safeguarding the partnership through documentation and follow-up, as well as three organisational readiness domains that function as ethical minimum requirements for reflective self-assessment for all involved. Contribution PC-PPI shifts the focus from general levels of influence to specifying and documenting meaningful decision rights for concrete activities, supported by practical tools such as a relational bridge framework and an impact log. The feedback loop supports contributor empowerment during the involvement process by making influence visible, explainable and contestable over time. Organisational readiness domains further clarify that PC-PPI cannot rely on willingness alone, but requires sustained ethical, structural and accountability support. Implications By translating person-centred ethics into concrete steps and organisational practices, PC-PPI offers a pragmatic way to reduce tokenism while remaining adaptable to context, resources and ongoing learning. The approach has implications for professionals, organisations, and policymakers seeking to move from formal PPI requirements towards auditable, ethically grounded partnership practices. Plain English summary Why this paper? Service users, patients, carers, and community representatives can actively contribute to healthcare improvement and research. This is also called patient and public involvement (PPI). However, PPI is not always experienced as meaningful. People may be invited too late. They may have little influence. They may also receive little or no feedback about how their input was used. This can be discouraging. What we did: We explored how PPI could be done in a more transparent way. We drew on ideas from person-centred care (PCC), where similar ethical challenges have been addressed. We adapted these ideas to PPI and call this approach person-centred PPI (PC-PPI). What we propose: PC-PPI has three practical steps: 1. Listening carefully to develop a shared understanding of what is most important, 2. Negotiating decision rights for each activity, 3. Documenting how input is used and feeding this back over time. We also describe three areas where organisations need to be ready. This includes support for both PPI contributors and professionals, e.g. through preparation or skills training. Organisations need routines for fair and accessible participation. They also need clear systems for accountability. Why this matters: PC-PPI aims for partnership. It does not promise that every suggestion will be adopted. Instead, it commits to transparent processes that make involvement clear, fair and visible. PPI contributors can see how they made a difference. Organisations can demonstrate transparent decision-making through documentation and follow-up. We hope this approach helps reduce tokenism, strengthens trust and supports more meaningful partnerships.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Accountability / Clinical medicine / Co-production / Collaboration / Comment / Concrete / Ethics / Evidence-based medicine / Medicine / Medicine & Public Health / Partnership / Patient involvement, Patient participation, Public involvement / Patient-centered care / Person-centered care / Person-centred care / Personhood / Service design / Tokenism