“The citizen is stepping into a new role”—Policy interpretations of patient and public involvement in Finland

Abstract

Involving patients and the public in healthcare decision-making is on the policy agenda in several countries. The aim of our study was to describe and analyse the development of patient and public involvement from a policy perspective. We argue that the language of health policies can influence both the aims and the development of involvement methods. In this study health policy documents, which have guided the development of patient and public involvement in Finland have been analysed using methods of Membership Categorisation Analysis. This has enabled us to explore how health policy documents categorise patients and the wider public in relation to involvement and orientate the involvement activities in which people are able to participate. Different set of abilities, expectations, responsibilities and opportunities is attached to the categories of patient, risk group, service user, customer and expert. Health policy documents often equate involvement with choice making by service users and customers; or as involvement in service development by experts. In both of these cases, involvement is depicted as an individual activity that requires personal responsibility and specialist knowledge. Although involvement opportunities have overall increased, they are primarily available to people that are "participation ready" and able to adopt roles promoted in policies. Health policy documents produce one interpretation of involvement, nevertheless it is important that diverse groups of patients, the public and health professionals participate in the discussion and express their views, which may differ from those of policy makers.

Potential of Peer Guidance to Empower Migrants for Employment

“…Experiential expertise indicates a new relationship between professional helpers and their clients (Jones & Pietilä, 2018), but despite the positive effects, voluntary activity may also lead to exploitation (Nylund & Yeung, 2005, p. 26, 30). While peer groups have become more popular, volunteers are increasingly responsible for achieving the goals of public integration policies and enhancing the participation of marginalised people.…”

Personal perspectives on patient and public involvement – stories about becoming and being an expert by experience

“…However, service level involvement (i.e. involvement in development and delivery) only became a prominent feature of health policies during the 2000s and 2010s (Jones and Pietilä ). The government, elected in 2015, continued to promote involvement in their Strategic Programme (Prime Minister's Office ) for health and welfare.…”

A Survey of Self-Perceived Knowledge and Knowledge Gaps of Medicines Research and Development Among Finnish General Public

“…As authorities, research groups and research funders are increasingly understanding the importance of patient and public involvement (PPI), it is gradually becoming an integral part of both medicines R&D and HTA processes (2,(7)(8)(9)(10). So far in Finland the public participation into medicines R&D and HTA has been rather minimal and only recently, academic research groups and national HTA bodies such as the Pharmaceuticals Pricing Board and Council for Choices in Health Care in Finland have started to open some of their processes for PPI (10)(11)(12)(13). However, the implementation of PPI in medicines R&D and HTA requires that the public has su cient knowledge of its concepts, methods, bene ts and rationale as well as its challenges.…”