People with an interest in patient and public involvement (PPI) spend a lot of time talking about definitions.
There is, for example, the question of whether members of the public should be described as “patients”, “service users” or “consumers”. Another question is whether they are “involved”, “engaged” or “participating”. Deeper debate considers whether people are “co-producers”, “co-creators”, or simply “experts by experience”.
What all of these debates have in common is that they reflect a discussion among health professionals about the status of patients.
Language reveals culture. And the debate about how to describe PPI reveals a culture in which power is firmly held by health professionals. It is about how those who hold power choose to define the terms on which patients and public will be invited to the table.
Our featured report this week makes the often overlooked point that “measures to strengthen the position of service users not only change the position of the users, they also alter the position of the professionals involved”. The paper examines different types of involvement, and their implications for the positioning of professionals.
So efforts to encourage self-management of long term conditions may be framed as empowering patients through self-determination and participation in decisions about their own treatment and care. This positions health professionals as educators, advisers and supporters.
Efforts to encourage sharing of lived experience can move professionals into a different position. In professionally-led groups, they can be seen as facilitators. In self-help groups, they may have no role at all.
Finally, in efforts to improve services through awareness of user perspectives, the service users may take the role of educators, while professionals become positioned as learners.
Health professionals managing PPI activities will – rightly – continue to debate the nature of public involvement. But they should not assume that their own role and purpose runs unchangingly through different types of engagement. Whether they know it or not, the very act of engagement changes their own position and status as much as that of patients.
Download report from the Patient Experience Library.
Read the full article here: https://www.patientlibrary.net/cgi-bin/library.cgi?page=Blog;prevref=;top=67