Name: Public defence: Joachim Støren Sagen
Start: 2024-12-18
End: 2024-12-18
Location: Diakonhjemmet Hospital, Diakonveien 12, Auditorium in the DBL building

Trial lecture: What are the challenges and opportunities for patient engagement in the evaluation of health services?

The ordinary opponents are:

First opponent: Professor Julia Abelson, McMaster University, Canada
Second opponent: Professor Jonathan Quetzal Tritter, Nord University, Norway
Leader of the committee: Professor Tone Dahl-Michelsen, OsloMet

The leader of the public defense is Professor Margreth Grotle, OsloMet.

The main supervisor is Senior Researcher Rikke Helene Moe, Diakonhjemmet Hospital.

The co-supervisors are Senior Researcher and Professor Ingvild Kjeken, Diakonhjemmet Hospital and OsloMet, and Professor Hanne Dagfinrud, University of Oslo and Diakonhjemmet Hospital.

Thesis abstract

At the societal level, patient engagement is emphasized as important in order to achieve the best possible treatment and rehabilitation.

Patient engagement can be organized through participation at the individual level in personal treatment or via patient representatives associated with healthcare institutions at the organizational level. Recent reports about rehabilitation in Norway request information on how patients are involved in the rehabilitation process and in the development of rehabilitation services.

This PhD project aimed to explore the importance of patient engagement in the development and delivery of healthcare services, examining the organization and the influence of patient engagement at individual and organizational levels trough

summarizing knowledge about how patient representatives are involved in the development and evaluation of healthcare services and how such involvement can affect the quality of healthcare services
translate, validate and culturally adapt an evaluation tool for patient engagement into Norwegian
explore what experiences patient representatives associated with specialized, private rehabilitation centres have with the organization of patient involvement and their influence on decision-making processes
explore associations between patient involvement, function, and goal achievement in individual rehabilitation trajectories.

Four studies

The research questions were answered through four studies.

A scoping review was performed to collect information about patient engagement at the organizational level. For the period 2005–2022, wide systematic searches to detect relevant literature from 4 different databases were performed.
A Canadian questionnaire designed to measure patient engagement at the organizational level was translated, validated and adapted to Norwegian conditions. The Norwegian version was named Evalueringsverktøy for brukermedvirkning (EBNOR).
The data from the survey in study two was also used to answer the research questions in study three, which explored organization and influence of patient representatives in advisory boards affiliated with rehabilitation centres. Responses was collapsed into categories that either facilitated or hindered patient engagement.
Patient engagement in rehabilitation at an individual level was explored as part of a large longitudinal study, RehabNytte, which followed patients who had attended specialized rehabilitation in Norway. They responded to the patient involvement part of the quality indicators for rehabilitation in addition to questions about function and personal characteristics. The association between involvement in goal setting and function and participation in the rehabilitation process and goal achievement was also explored.

Findings

The scoping review included 37 studies. Few studies reported hard outcomes, like health economic benefits of patient engagement. Studies also reported a lack of allocated resources to education.

In study two, the translated questionnaire, EBNOR was found to be understandable, and showed satisfactory validity and data quality, it could thus be considered suitable for measuring patient engagement in Norwegian.

In the third study, 47 patient representatives from patient advisory boards responded to EBNOR. The vast majority (85 percent) reported that they believed rehabilitation centres improved as a result of patient engagement, but still reported limited influence.

In study four, participants from RehabNytte (n = 2113) contributed with data. Most of the study participants (95 percent) were involved in setting their own goals, in developing their rehabilitation plans (79 percent) and were involved in multidisciplinary meetings (84 percent) during rehabilitation.

There was a positive association between being involved in goal setting / planning and improved functioning and goal achievement.

People who participated in preparing their own rehabilitation goals had three times the chance of achieving them, and involvement in the preparation of the rehabilitation plan doubled the chance of goal achievement.