Patient engagement in the development and delivery of healthcare services

Sammendrag

Background: Patient engagement (PE) has gained significant international prominence at the societal level (macro), the organizational and system level (meso) and the individual level (micro) in recent decades. PE is politically rooted to ensure that patients’ perspectives, preferences, needs and values are considered in the development of health services and in personal interaction with the health service. PE can be described as the process of improving the interaction between health personnel, patients, families and carers’ competences to facilitate and support patient involvement in order to ensure quality, safety and person-centred health services. Although the idea of PE is well recognized, patients’ preferences and needs are not always prioritized in the healthcare service, and there is a need for more knowledge about PE in the development and delivery of healthcare services.

Objectives: The overall purpose of the project was to explore PE in the development and delivery of healthcare services. More specifically, we wanted to: I) Summarize available knowledge about how patient representatives are engaged in the development and delivery of healthcare services, and how such engagement can affect the quality of healthcare services. II) Translate, validate and culturally adapt the Public and Patient Engagement Evaluation Tool (PPEET) Organization Questionnaire from English to Norwegian. III) Examine how patient representatives in patient advisory boards describe their organization, influence and impact on decision-making processes at rehabilitation centres. IV) Explore associations between patient involvement in the rehabilitation process and changes in function and goal attainment.

Methods: The research questions were answered using three different designs. I) A scoping review was carried out to summarize knowledge about PE at the meso level based on wide systematic literature searches conducted in MEDLINE, EMBASE, Cochrane and PsycINFO databases for the period 2005 to 2022, limited to studies in English, Norwegian, Swedish or Danish. II, III) A Canadian questionnaire to measure PE at the meso level, the PPEET, was translated, validated and culturally adapted to a Norwegian context (Evaluation form for user involvement (EBNOR)) through forward-back translation and interviews with patient representatives. The validity was then examined by testing hypotheses in a cross-sectional study with 47 respondents recruited from patient advisory boards (PABs) from 36 different rehabilitation centres. To examine how patient representatives from PABs describe their organization and influence at the meso level, these data were also used to answer the research questions in study III. IV) More than 2 000 participants from the longitudinal multi-centre study RehabNytte evaluated perceived PE in their own rehabilitation trajectory by checking the PE domain of the quality indicators for rehabilitation, in addition to data about function (Patient-Specific Functioning Scale) and personal characteristics. In the analyses, categorical data were summarized into modal values using frequencies and percentages. Free-text responses were analysed and coded into categories as barriers or facilitators to PE. The association between patient involvement and function, and goal achievement was explored with t-tests and regression analyses.

Results: I) The scoping review included data from 37 studies, and found that hard, operationalized outcomes of PE were lacking. Hard outcomes can be reduced costs and improved physical function. The review also found that PE processes can be facilitated by dedicated finances for PE education, and by ensuring sufficient representativeness among the different stakeholders like patient representatives, healthcare professionals and managers. II) A total of 150 patient representatives from PABs were invited and 47 responded to the translated version of the PPEET. Interviews with patient representatives confirmed the relevance of the content, and the completed questionnaire showed sufficient data quality and construct validity. III) Results from Paper III showed that the representatives from PABs in rehabilitation were generally satisfied with how PE was structured, but they also reported that invisible social PE barriers such as hard-to-understand language could hinder PABs’ influence. IV) The findings from the longitudinal study showed a positive association between patient involvement in the process of goal setting in rehabilitation and improved function, and goal attainment.

Conclusions: There is a lack of hard, operationalized outcomes as a result of PE at the meso level. EBNOR was considered a valid questionnaire that can be recommended for evaluating PE at the meso level in a Norwegian context. PAB representatives in Norway experienced that their engagement strengthened the organization, but at the same time, they reported a lack of influence. Involvement in goal setting was associated with improved function and goal attainment, which highlights the importance of structures that facilitate meaningful PE.