Policymakers
Reason for engagement: Policymakers are responsible for setting and amending policies as part of national, regional or local government. Policy change can help address systematic healthcare issues.
Examples: National members of parliament with an interest in rare diseases/health, government officials in health departments, policy advisers to relevant policymakers, local politicians including mayors and councillors.
Tips on tailoring your communication with policymakers:
- Keep communication succinct – policymakers are often very busy.
- Statistics can be an effective way of presenting an issue (see our Wilson’s disease factsheet).
- Communicate how issues might affect the health system more widely e.g. impact on cost.
- Human stories can make your engagement more interesting and memorable.
- Consider linking your message to the a relevant policy or strategy, if possible e.g. a new national rare disease plan.
Decision-makers
Reason for engagement: Decision-makers have an impact on real-world outcomes. Engaging with the right decision-makers can result in significant positive change.
Examples: Health regulatory bodies, health technology assessment bodies, health system leaders with responsibility over rare diseases/liver/neurology, regional or hospital-based rare disease/liver/neurology service managers.
Tips on tailoring your communication with decision-makers:
- Communicate how issues might affect them or their organisation directly.
- Statistics can be an effective way of presenting an issue (see our Wilson’s disease factsheet).
- Provide feasible next steps they can take to drive change.
Policy influencers
Reason for engagement: These individuals are influential with policymakers and decision-makers. Engaging with policy influencers can apply pressure on people with the power to deliver real change.
Examples: Wilson’s disease patient organisations, liver or neurology patient organisations, professional societies.
Tips on tailoring your communication with policy influencers:
- Communicate how issues might affect them or their organisation directly.
- Address how they can play a role in supporting change.
