This post is a followup of my recent post Why are patients the only ones around the table expected to work for free? In this new post, I have made a checklist and compiled some resources that may be useful for for patients when invited to contribute to for example research, care improvement, conferences, products, etc.

The term “meaningful engagement” that I have used in the title comes from a WHO report that was published in 2023, and can be found under Resources further down.

I see meaningful engagement as engagement that leads to meaningful change.

Checklist

First the checklist, let me set the scene:

You have received an invitation of some sort to contribute in some way… In my experience, often the person inviting you is not entirely sure what they want your help with. They have heard, maybe from their boss, their colleagues or someone else, that it is very important to involve patients. Maybe they don’t fully understand why, and that’s OK. For me, many great collaborations have started with a very unclear beginning. The key factor is if the person contacting you have the right mindset and the only way to establish that is by interacting with them. It can take some time but my experience is that it is worth investing that time early on instead of encountering difficult issues later in the process.

I hope the checklist below can help you. Use it to quickly assess whether the invitation treats you as a knowledge contributor or as free labor.

1) Clarify the role

• What exactly am I being asked to do?
• Is this primary (as a participant) or secondary (improve design/process) involvement?
• What decisions or outputs will my input influence?

2) Clarify the expectations

• How many meetings? How long?
• What preparation is expected?
• Will I be asked to read materials in advance?
• Are follow-ups or written feedback expected?

If preparation is required → this is work.

3) Ask directly about compensation

• Is there an honorarium or hourly compensation?
• Are preparation time and meeting time both compensated?
• Are travel time and expenses covered?

If the answers are vague, that’s a signal.

4) Watch for “replacement compensations”

Be alert if you hear:

• “You’ll get visibility / contacts”
• “You can use our system/app for free”
• “Others do this voluntarily”
• “There is no budget”
• “It’s complicated administratively”

These are red flags, not benefits. For common arguments and counterarguments, see this post.

5) Check how professionals are treated

• Are the researchers/organizers/project team members doing this during paid work hours?
• Are speakers, consultants, or moderators paid?

If yes → the principle should apply to you.

6) Ask how your input will be used

• How will my contribution be documented?
• Will I receive feedback on how it influenced the project?
• Is this advisory or actually consequential?

Vague answers often mean symbolic involvement.

7) Consider accessibility and fairness

• Would someone without financial flexibility be able to say yes to this?
• If not, the setup is structurally excluding many patients.

8) Ask for it in writing

• Role description
• Time expectations
• Compensation terms
• Reimbursement of expenses

If it feels uncomfortable for them to write it down, that’s informative.

9) Decide your boundary

You can say:

“I’m happy to contribute, but I don’t do this type of work without compensation.”

This is not rude. It is professional.

10) Remember

You were invited because of what you know.
That knowledge has value.

Resources

Below, I have listed some resources that support meaningful engagement.

WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions

Link to document

Highlights:

• Target audience: Member States and other stakeholders
• “The overall objective of the framework is to support WHO and Members States in meaningful engagement of people living with NCDs, and mental health and neurological conditions to co-create and enhance related policies, programmes and services.”
• Practical advice and recommendations
  • 4. Principles of meaningful engagement
  • 5.1 Sustainable financing. Meaningful engagement should be supported by sustainable financing for all engagements with individuals with lived experience remunerated at a rate equivalent to that for technical experts.
• Conclusions:
  • A lot of work still remains
  • The way forward lies in collaboration

WHO Guidance for best practices for clinical trials

Link to document

Highlights:

• Target audience: Everybody working on clinical trials
• “strengthening clinical trials to provide high-quality evidence on health interventions and to improve research quality and coordination to identify and propose best practices and other measures to strengthen the global clinical trial ecosystem and to review existing guidance and develop new guidance as needed on best practices for clinical trials.”
• Main focus is RCTs
• Emphasizes meaningful engagement:
  • 2.2 Good clinical trials respect the rights and well-being of participants
  • 2.3.1 Working in partnership with people and communities
  • 3.2.1 Patient and community engagement

Update to the Declaration of Helsinki

I have also written a blog post on the update to the Declaration of Helsinki, the post is in Swedish, use your favorite translator to read it: Link to post