Getting involved: The extent and impact of patient and public involvement in the Swedish health system

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Patient and public involvement is framed as beneficial for individuals and for the health system. However, little is known about the extent of involvement, or of its impact. Based on data from Sweden, we show that apart from voting in regional elections (76%), more people reported involvement as individual patients (23%) than part of collective activities (5%) or activities relating to a citizen perspective (4%). There was no correlation between how many people participated and the estimated impact – which was generally low. More extensive involvement is thus not linked to the potential to influence decisions. We argue that to achieve the benefits associated with patient and public involvement it is crucial to understand more about people’s motivation for being involved and what underlies low estimates of impact. This requires a more systematic approach to PPI-policies, how they are evaluated and their results communicated to participants and the society. We also argue that a future challenge for the Swedish health system, and for other similar health systems, is to support long-term collective involvement in the midst of growing individualization of health services and involvement opportunities primarily intended for patients.

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  • The extent and impact of patient and public involvement in the Swedish health system

    Rights statement: © Cambridge University Press 2018.

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Original languageEnglish
JournalHealth Economics, Policy and Law
Publication statusAccepted/In press - 25 Oct 2018

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© Cambridge University Press 2018.

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