Indicator Development for the Evaluation of User-Researcher Collaboration in Health Research: A Co-Designed, Modified...

Partnering with patients, close others and the public (users), termed patient and public involvement and engagement (PPIE), is essential to ensure relevant and impactful health research. To date, definitions of effective collaborations between users and researchers to plan and evaluate such collaborations are scarce. Therefore, building consensus on what makes user-researcher collaborations effective and genuine is an important step. The goal of this co-designed study was to define and establish expert agreement on key quality indicators for the evaluation of such partnerships in health research.

We conducted a three-round modified Delphi-study (12/2023 - 07/2024). The first round included a participatory expert workshop with seven users and seven researchers, facilitated by two citizen science experts, to discuss and identify potential indicators, which were then refined by four user-researcher delegates. In the second round, these indicators were assessed in a survey among the workshop participants for their relevance, clarity and completeness. In the final round, three user-researcher delegates operationalized the redefined and reduced indicators, which were assessed for their relevance, clarity and ease of response in another survey with an extended group of 24 users and researchers.

The participatory expert workshop resulted in a set of 35 potential indicators. In the first survey (response rate 11/14), suggestions were made to optimise the indicator's clarity and completeness, and 5/35 indicators were considered (partially) redundant. Hence, indicators were merged, redefined, and formulated into 30 statements. In the second survey (response rate 13/24), indicators were evaluated as partly or fully relevant, with some suggestions to optimise clarity and make indicators easier to respond to (ease of response). The 30 quality indicators were subsequently categorised around structures (n = 9), processes (n = 9) and outcomes (n = 12) of PPIE.

In this co-developed, modified Delphi-study, we brought user and researcher expertise together to identify and reach expert consensus on key indicators to evaluate user-researcher collaboration in health research. This study resulted in an operationalized set of indicators relevant to both users and researchers using PPIE in health research. Next, the proposed indicators and their operationalization should be validated in practice.

This study was co-designed and co-conducted by the patient and family member advisory board and health researchers of the Family Support in Intensive Care Units (FICUS) trial. The patient and family member advisory board includes a patient expert (TZ) and three family member experts (TB, MJ, CdBM) with lived expertise in the field of critical illness or trauma, and is led by JS, who is an experienced patient research partner. Since this study's aim was to develop indicators for the evaluation of PPIE in health research from both users' and researchers' perspectives, collaboration in this study was a matter of course.