Acceptability and Perceived Benefits and Risks of Public and Patient Involvement in Health Care Policy: A Delphi Survey in Belgian Stakeholders.

Background: In systems with public health insurance, coverage decisions should reflect social values. Deliberation among stakeholders could achieve this goal, but rarely involves patients and citizens directly.

Objectives: This study aimed at evaluating the acceptability, and the perceived benefits and risks, of public and patient involvement (PPI) in coverage decision making to Belgian stakeholders.

Methods: A two-round Delphi survey was conducted among all stakeholder groups. The survey was constructed on the basis of interviews with 10 key stakeholders and a review of the literature on participation models. Consensus was defined as 65% or more of the respondents agreeing with a statement and less than 15% disagreeing. Eighty stakeholders participated in both rounds. They were defined as the Delphi panel.

Results: Belgian stakeholders are open toward PPI in coverage decision processes. Benefits are expected to exceed risks. The preferred model for involvement is to consult citizens or patients, within the existing decision-making structures and at specific milestones in the process. Consulting citizens and patients is a higher level of involvement than merely informing them and a lower level than letting them participate actively. Consultation involves asking nonbinding advice on (parts of) the decision problem. According to the Delphi panel, the benefits of PPI could be increasing awareness among members of the general public and patients about the challenges and costs of health care, and enriched decision processes with expertise by experience from patients. Potential risks include subjectivity, insufficient resources to participate and weigh on the process, difficulties in finding effective ways to express a collective opinion, the risk of manipulation, and lobbying or power games of other stakeholders.

Conclusions: PPI in coverage decision-making processes is acceptable to Belgian stakeholders, be it in different ways for different types of decisions. Benefits are expected to outweigh risks.