Payment and insurance in patient advocacy roles
When your voice becomes counselling – what does that mean for you as a patient advocate?
As a patient advocate, participating in patient councils, panels or advisory roles, you have a big impact. Your experience shapes research, treatments and decisions. But it also raises questions about liability, safety and your rights.
At PiCC United, we want to protect and empower the patient voice – not just elevate it. That’s why we focus on:
When are you an advisor?
When you provide input in an organised collaboration – e.g. with researchers, companies or authorities – it can legally and ethically be considered consulting.
Therefore, you should:
- Clarify the purpose of your participation,
- Know whether you are representing yourself, other patients, or an organisation,
- Ask how your input will be used and shared.
How do you protect yourself?
- Always ask for written information about your role and how your contributions are used.
- Ask if you are insured and compensated – and if your input will be published.
- Use PiCC United’s upcoming toolkit and checklist so you know what you are agreeing to.
Why is it important?
Because true partnership requires transparency, respect and trust – both for you as a patient and for the organisations you work with. You have the right to be taken seriously without being held responsible for the decisions of others.
Payment – questions to ask:
Will I be paid for my time and contribution?
- If yes: How much and how is it paid?
- If no: Why not?
Is there an hourly rate or a fixed amount?
- And is the amount set according to principles such as Fair Market Value (FMV)?
Do I have to send an invoice or am I volunteering without pay?
Do they cover transport, catering and accommodation for physical meetings?
- If yes, do I have to pay out of pocket or will I be prepaid?
Are there consequences for e.g. pension, social security or sickness benefits if I receive payment? (Important in many EU countries – check with your municipality or trade union).
Insurance – questions to ask:
- Am I covered by insurance during meetings, travelling or activities?
- For example, in case of accident, illness, property damage or cyber incidents.
- If collaborating online – am I covered for data breaches or technical liability?
- What if I fall ill or have to cancel – will I lose payment or cover?
- What type of insurance do they (organiser/company) have and does it apply to me?
- If the collaboration is international – does their insurance apply in my country?
Extra tip:
Ask for everything in writing – e.g. a co-operation agreement or contract that outlines how payment and insurance are handled.
If in doubt, get in touch with PiCC United – we’ll be happy to go through the material with you.
Examples of FMV rates and resources
EFPIA patient remuneration principles The European Federation of Pharmaceutical Industries and Associations (EFPIA) recommends that patient remuneration should be fair, reasonable and appropriate, without exceeding the market value of the services provided.
Factors that should be considered include:
- The patient’s individual expertise and experience
- The complexity of the tasks assigned
- The total time invested, including preparation time
- The patient’s country of residence and cost of living
- Travel time and costspatientfocusedmedicine
Read more in EFPIA’s document ‘Working Together with Patients’: EFPIA’s principles for reimbursing patients
PFMD’s Fair Market Value (FMV) tools Patient Focused Medicines Development (PFMD) has developed global principles and tools to support fair reward for patient engagement. These tools help define the nature of engagement and the expertise required, and facilitate an open dialogue on appropriate remuneration.
Explore PFMD’s CME tools here: PFMD’s CME tools
WECAN study on CME for patient experts The Workgroup of European Cancer Patient Advocacy Networks (WECAN) has conducted a study highlighting the importance of compensating patient experts fairly for their contributions. The study emphasises that factors such as patient experience, complexity of the task and time invested should influence compensation.
Read WECAN’s report here: WECAN’s report on FMV
National Health Council’s FMV Calculator (US) The US National Health Council has developed an FMV calculator to help determine appropriate fees for patient engagement activities. Although it is based on US conditions, it can provide inspiration for similar calculations in other countries.Patient Engagement Open Forum
Access the FMV calculator here: NHC’s CME Calculator
These resources can help you understand how to determine appropriate patient engagement fees and ensure your contribution is valued and compensated fairly.
Legislation and standards – a quick overview:
EU:
- GDPR – The General Data Protection Regulation protects your personal data in patient panels and feedback processes.
- EMA’s patient and citizen involvement sets a clear framework for how patients can be involved in regulatory advice.
- The IMI Code of Engagement (Innovative Medicines Initiative) emphasises responsibility and mutual respect in research.
UK:
- INVOLVE’s definition of public involvement (now part of NIHR) clarifies roles and ethical considerations for patients as advisors.
- The NHS has guidelines on when you are considered a lay advisor and what it entails.
UNITED STATES:
The FDA’s Patient Engagement Guidance describes how patients can be involved in drug development with clear roles and responsibilities.
The PCORI Engagement Rubric is widely used to ensure respect and balance in patient collaborations.
Asia and Africa:
- Several countries are working to develop ethical and legal frameworks. WHO and the African Medicines Agency (AMA) support structures for safe and meaningful engagement.
- Asia-Pacific Economic Cooperation (APEC) PPWE includes patient voices in healthcare decisions and is working on guidelines.