Setting up and/or running a patient organization is a challenging venture. It encompasses many actions or steps:
- Research and identify unmet needs.
- Define your mission and goals and develop a strategic plan.
- Establish and manage legal & financing structures.
- Build and manage a dedicated team.
- Build your advocacy strategy and engage stakeholders.
- Develop a communication strategy.
- Contribute to clinical trial design and drug evaluation.
Thankfully multiple sources of information, databases and trainings have been developed by patient groups or public-private initiatives to support patient organisation managers and advocates. We recommend you draw on what is currently available to start developing your own strategies, processes, and tools. It will save you valuable time and effort.
Resources, which we are aware of, are listed below each of the different steps you should consider taking as you create and/or run your patient group. If you have identified additional information, which you consider would be useful to other patient advocates, please let us know and send us an email to samantha@acuteleuk.org.
Research and identify unmet needs
Identify the specific health issue or patient population you want to support. Conduct thorough research to understand the needs, challenges, and existing gaps in services or advocacy for that group. Here are below toolkits to develop and conduct your own surveys and collect patient experience data.
Learn from, use, or adapt the following resources:
Scottish Health Council (SHC)’s Participation Toolkit: How to Conduct Surveys
PFMD’s Tools for measuring outcomes that matter to patients & families
PFMD’s Patient Experience Data use throughout the product development cycle
PFMD’s Patient Experience Data use throughout the Healthcare process
Define your mission and goals and develop a strategic plan
Determine the purpose of your organization and the specific objectives you want to achieve. Clearly articulate your mission statement, which will guide your activities and attract like-minded individuals to join your cause.
Outline a comprehensive strategic plan that includes short-term and long-term goals, along with the strategies and actions required to achieve them. Consider factors such as advocacy, support services, community engagement, fundraising, and sustainability.
Learn from, use, or adapt the following resources:
The European Patients’ Forum Strategic Plan 2021-20216
Establish and manage legal & financing structures
Determine the legal structure that best suits your organization, such as a non-profit or charitable entity. Consult with legal professionals to understand the legal requirements, tax implications, and regulations related to setting up and operating a patient organization. Additionally, establish financial systems, such as budgeting, accounting, and fundraising strategies.
Learn from, use, or adapt the following resources -Regulations, legal support, and structure
Webinar on how patient organisations can access pro bono legal support (European Patient Forum)
Learn from, use, or adapt the following resources – Budgeting, accounting and fundraising
Canadian Cancer Survivor Network – Webinar on Pharma funding of Patient Groups
Share4Rare effective fundraising
NORD’s A to Z Fundraising Guide
FSDH Rare Disease Day Fundraising Toolkit
Cancer Research Example on how to do your own fundraising
The giving machine fundraising ideas
EPF’s webinar on Transparent Funding in Patient Organisations
MPE Masterclass 2021 | Fundraising for patient groups and collaboration with industry
WeCan : Financial Management of Non-Profit Patient Organisations
Build and manage a dedicated team
Surround yourself with passionate individuals who share your vision and are committed to making a difference. Please find below some help to run meetings effectively and recruit volunteers or board members with diverse skills and experiences to contribute to the organization’s success.
Learn from, use, or adapt the following resources – Administration
Wecan’s Guidance and checklists for patient organizations to run virtual meetings
Learn from, use, or adapt the following resources – Compensating patients for their involvement
Fair Patient Engagement Planner
National Health Council Patient Engagement Fair-Market Value Calculator
Build your advocacy strategy and engage stakeholders
Collaborate with healthcare professionals, patient advocates, policymakers, and other relevant stakeholders. Engaging these groups can provide valuable insights, resources, and support for your organization’s initiatives.
Learn from, use, or adapt the following resources – Patient engagement and advocacy trainings and toolkits
European Patient Forum (EPF) Advocacy 101 – Advocacy course for young patients
EUPATI Patient Engagement Trainings
EURORDIS Open Academy : Leadership & Advocacy training
Global Heart Hub – Introduction to Advocacy for Patient Organisations
PFMD’s Patient Engagement Quality Guidance
Share4Rare toolkit for patient advocacy
Learn from, use, or adapt the following resources – Patient participation to regulatory approval and reimbursement processes
European Medicines Agency (EMA) Patients and consumers
HTAi Patient and Citizen Involvement Group’s resources and material
HTAi webinar: How Patient Involvement is Making a Difference in HTA Perspectives of Impact
EUPATI webinar : Patient Involvement in HTA in Europe
PREFER – Patient Preferences – Innovative Medicines Initiative (IMI)
Develop a communication strategy
Develop a communication strategy to raise awareness about your organisation’s mission and activities. Utilize various channels, such as social media, websites, newsletters, and public events, to effectively communicate your message.
Learn from, use, or adapt the following resources:
EURORDIS Digital School on Social & Digital Media
Lung Cancer Europe: Effective use of social media in patient organisations
Contribute to clinical trial design & research publications
Learn from, use, or adapt the following resources:
CIOMS’s Patient involvement in the development, regulation and safe use of medicines
EUPATI’s Open Classroom’s online courses in medicines research and development
EURORDIS Open Academy School on Scientific Innovation & Translational Research
EURORDIS Open Academy School on Medicines Research & Development
Patient-Centered Outcomes Research Institute (PCORI)’s Engagement Resources
PFMD’s How-to guide for patient engagement in the early discovery and preclinical phases
PFMD’s How-To Guide on Patient Engagement in the development of a Clinical Outcome Assessment
PFMD’s How-to Guide on Patient Engagement in Clinical Trial Protocol Design
WeCan’s open-access course “Patients in Publications”
Additional training and resources for patient organisations and advocates
We recommend you regularly consult the following websites for more information on patient involvement in
PFMD’s Patient Engagement Training for Medical Devices
PFMD’s Patient Engagement Training for the Pharmaceutical Sector