Patient and public involvement in healthcare: Potentials and challenges of lay expertise and experiential knowledge

Research output: Book/ReportDoctoral thesisCollection of Articles

Abstract

Patient and public involvement (PPI) has become an established part of the health policy agenda in several countries, including Finland. It is founded upon various rationales ranging from democratisation of decision-making to increased healthcare consumerism. Although, involving patients and the public has the potential to strengthen the acceptability of healthcare decision-making and improve service accessibility, its practical implementations can also be tokenistic and inconsequential. In practical terms, involvement refers to the inclusion of patients and members of the public – i.e. lay participants – in all aspects of healthcare related planning, development, delivery, and research. Involvement can be implemented through various direct and indirect methods that occur on societal/political, service, and individual/treatment levels. Whilst this study touches upon the political and individual levels, the main focus will be on the more recent developments in Finnish health policies and services, which bring brand new expertise into healthcare development and delivery in the form of lay expertise and experiential knowledge.

In this study, I delve deeper into the potentials and pitfalls of patient and public involvement by exploring it from the policy, lay participant and third sector organisation perspectives, with examples drawn from involvement occurring within cancer and mental health services. The materials consist of national health policy documents (n=7) and interviews with experts by experience, peer support workers and organisational representatives (n=27). The materials are analysed using a variety of qualitative methods to gain insights into the positions constructed for and by lay participants; to identify tensions, barriers, and benefits of service level involvement; and to explore the construction and applications of experiential knowledge.

The results indicate that although involvement is supported by the policy rhetoric, it is often narrowly interpreted. People with lived experiences and the organisations representing them have new channels through which they can influence service development and delivery. However, they also face significant barriers that relate to ambivalent policy guidance, lack of role clarity, dismissive attitudes and structures that make involvement much easier of groups and individuals that do not require much facilitation. In practice, involvement is made easier for active and ‘participation ready’ individuals, which can limit the diversity of the experiences that get through to health services.

Lay participants attempt to establish themselves as experts, positioned between health professionals and patients. Although their experiential knowledge is rarely afforded equal value to that of clinical/professional knowledge, it is being used in involvement activities to relate and support patients, educate professionals and provide a more complex and rounded view of what it is like to live with a condition, receive treatment and navigate care services. The results suggest that experiential knowledge has transformative potential, although certain restrictions and filters are imposed upon it during its use and communication through involvement activities. In order to overcome some of the barriers outlined in this study, there needs to be more institutional commitment towards involvement, willingness to adapt and clarity over the aims and rationales. Additionally, it is important for policy makers and health services to think of ways to engage the public as well as those who are not able to engage without facilitation. Health services and professionals should attempt to understand both the limitations and potentials of experiential knowledge within healthcare and the wider society.
Original languageEnglish
Place of PublicationTampere
PublisherTampere University
ISBN (Electronic)978-952-03-1994-6
ISBN (Print)978-952-03-1993-9
Publication statusPublished - 2021
Publication typeG5 Doctoral dissertation (articles)

Publication series

NameTampere University Dissertations - Tampereen yliopiston väitöskirjat
Volume430
ISSN (Print)2489-9860
ISSN (Electronic)2490-0028

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