Methodology for constructing scenarios for health policy research: The case of coverage decision-making for drugs for rare diseases in Canada

• Published in: Technological forecasting & social change 2021-10, Vol.171, p.120960, Article 120960
• Main Authors: Douglas, Conor M.W., Panagiotoglou, Dimitra, Dragojlovic, Nick, Lynd, Larry
• Format: Article
• Language: English
• Subjects: Advisors; Analysis; Decision making; Disease; Drug coverage decision-making; Drugs; Drugs for rare diseases; Explorative external scenarios; Focus groups; Future; Health care policy; Health planning; Health policy; Health research; Health services; Medical policy; Medical research; Medicine, Experimental; Methods; Pharmaceutical innovation; Policy analysis; Policy making; Rare diseases; Research methodology; Scenario studies; Target recognition
• ISSN: 0040-1625; 1873-5509
• DOI: 10.1016/j.techfore.2021.120960

•Here specific scenario methodology are described to help inform health policy.•Methods are demonstrated in coverage decision-making for drugs for rare diseases.•Scenarios are used in policy focus groups to explore impacts of external factors.•Scenarios are shown to help policy makers identify areas for positive change.•They help to identify additional challenges and think differently about the future. When futures are uncertain and technological developments stand to have large impacts on healthcare systems, scenario studies can be deployed as a tool for policy exploration. We describe the important differences between firm-based and policy-oriented scenarios, and show how to adapt them for health policy. Our approach involves a five-phase process. Background interviews with a diverse group of stakeholders are used to identify focal points and future challenges. Interview data is analyzed to identify the key drivers of future challenges, which are then used to develop a set of scenarios. The scenarios are deployed in a focus group setting with relevant health policy makers and advisors. We illustrate this approach with our scenario study on coverage decision-making for drugs for rare diseases in Canada. Our focus here is on the extension and application of this scenario method and a sharing of our experiences while applying this method. We demonstrate how scenarios can be applied to identify targets of robust health policy strategies that will be of value irrespective how the future unfolds. Our post-focus group questionnaire show that the majority of participants found the scenario focus group useful, and helped them to identify additional challenges regarding drugs for rare diseases.