Working together to set priority setting in health research with an optimal contribution of biobanks: case study on NASH

A multi-stakeholder dialogue (MSD) is an alternative way of consulting all stakeholders actively involved, or beneficiary of research outcomes, who are currently not involved in research prioritization. In general, it is a multi-actor and iterative process in which citizens and patients work together with researchers, caregivers, and research sponsors to prioritize research topics and identify challenges. The methodology of MSD is being increasingly employed in different countries around the world (Netherlands and UK as pioneers). Based on the state of the art he King Baudouin Foundation (Belgium) has designed 3 pilot projects to evaluate and test the MSD methodology. In one of those, the central question in the MSD approach was defined as How can hepato-biobanks be optimally used in order to maximize their benefit for patients and society? Through a process of different rounds of step-wise information gathering and ultimately a MSD face-to-face consensus meeting, the Belgian King Baudouin Foundation and the BBMRI.be and BASL (The Belgian Association for the Study of the Liver) have brought together the voice of all stakeholders. During a first multi-stakeholder workshop, a number of criteria were brought forward for setting the focus and scope of the project. When applying these criteria to all liver diseases, non-alcoholic fatty liver disease (NASH) was selected to best meet the criteria. During a multi-step process the needs of the NASH community were discussed with different stakeholders (donors, patients with liver diseases, health professionals providing care to liver patients, researchers, representatives from research sponsors and industry, biobank managers, ELSI representatives) in separate focus groups. Afterwards, the most relevant issues for biobanking were selected and prioritized by the different stakeholders in a consensus meeting. The result of the project was 24 NASH research questions that can be answered with the use of biobank samples. In a next step, projects will be setup to tackle the research priorities that were defined within this project. With this pilot project the MSD methodology was evaluated to induce a paradigm shift in research prioritization, inspired by Belgian stakeholders in liver research, people involved in various aspects of biobanks, and patients and (potential) sample donors.