Research involvement and engagement · 2026
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.
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Bergholtz Jana, Wallström Sara, Gyllensten Hanna, Forsgren Emma, Björkman Ida, Öhlén Joakim, Ekman Inger, Wolf Axel
Аннотация
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.
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.