(Detta inlägg finns även på svenska: LÄNK)

(This post is complemented with a checklist: LINK)

I have been part of literally hundreds of conversations and meetings with researchers, healthcare professionals, companies, agencies, conference organizers and others wanting to involve patients. Here, I have listed 12 arguments that I have heard when asking if the offer comes with some form of payment (plus one bonus argument, which I think is the true reason that patients are often expected to work for free)

First, let’s make sure that we’re talking about the same thing:

Primary or secondary patient involvement?

When I teach or present on patient involvement, I always spend some time at the start to ensure that we all agree on what we’re talking about. If the topic is how to engage patients in participating in research studies or clinical trials, I refer to it as primary patient engagement. For conversations on getting patient input on the structure and/or process of studies or trials to improve them for upcoming participants, I use the term secondary patient engagement. I have written about this before => link to post.

Many regulatory bodies, research funders, governmental authorities and others all around the world are increasingly promoting, encouraging, and even demanding secondary patient engagement for applications and projects. And that is what this post is about: secondary patient engagement.

I want to point out that the same principles apply to engaging patients to help improving healthcare processes or facilities, medtech products, evaluating research applications, speaking at conferences etc.

Here we go, 12 arguments I’ve heard on why not to pay patients:

(edit: now with five additional arguments, based on comments and feedback, between reasons 12 and 13)

Reason 1: “This is voluntary engagement, not work”

Imagine a project meeting where a researcher, a clinician, a project manager—and a patient—are all invited to help improve a study design. The meeting has an agenda, background material is sent out in advance, and everyone is expected to read it, think it through, and contribute informed input.

The researcher, clinician, and project manager are all attending as part of their paid workday. The patient is described as “volunteering.”

Yet the expectations are the same: show up on time, be prepared, share expertise, and help shape decisions the project depends on. The only real difference is how the contribution is labeled—and whether it is compensated.

How can this argument be met?

Counterarguments

• The tasks are defined, scheduled, and requested by the organization → this is work.
• Volunteering is initiated by the individual. Here, the system initiates.
• This is organized knowledge work, not volunteering.

Reason 2: “Compensation threatens independence”

Imagine the same meeting where everyone is paid for their time—except the patient, who is told that payment might make their input less independent. The implication is that being unpaid makes their perspective more trustworthy. Strangely enough though, the paid professionals’ independence is never questioned.

Counterarguments

• Everyone else in the room is paid without their independence being questioned.
• Transparency about compensation increases credibility.
• Independence is secured by transparency, not by lack of payment.

Reason 3: “But researchers (doctors, nurses, etc) do this (review funding applications, sit on advisory boards, present at conferences, etc) without payment”

No, they don’t. This argument overlooks that these activities usually take place within paid employment, during salaried work hours, and contribute to professional merit, networks, and career progression. What appears as “unpaid” is in fact embedded in a system where time, status, and long-term benefit are already compensated. Patients, in contrast, are expected to contribute outside any such structure.

Counterarguments

• For professionals, this work happens within paid roles and paid time; for patients, it does not.
• These activities build careers and merit for professionals—patients receive no equivalent benefit.
• What looks unpaid for staff is still supported by salary, status, and infrastructure; patients stand outside all three.

Reason 4: “There’s no budget for paying patients”

Another type of argument relates to financial aspects. It is often said that compensation simply wasn’t planned for, as if budgets were fixed facts rather than reflections of priorities. Yet the same project easily finds funds for venues, catering, consultants, and staff time—which simply means that the real issue is not lack of money. It’s about what the organization sees as important.

Counterarguments

• Budget reflects priorities, not constraints of nature.
• The same budgets accommodate consultants and communication activities.
• If it is not in the budget, it is because it was deprioritized.

Reason 5: “It’s so administratively complicated”

This argument points to practical hurdles—tax forms, payment systems, insurance, procurement rules—as if these were insurmountable barriers. But the very same administrative machinery routinely handles fees for consultants, speakers, and external experts. What it reveals is not true complexity, but that the system was never designed with patients in mind as formal contributors.

Counterarguments

• The system already manages consultant fees and honoraria.
• “Complicated” means the organization has not adapted to patients as contributors.
• Administrative systems should adapt to reality, not the other way around.

Reason 6: “We don’t want to create ‘professional patients’”

This argument reflects a concern that some patients might become too experienced, too familiar with research and healthcare processes, and therefore somehow less “authentic.” The strange thing is that in every other context, growing competence and repeated involvement are seen as assets that improve quality. What is framed as a risk here is, in practice, the very process by which expertise is developed.

Counterarguments

• What is being described is competence development.
• We do not question “professional researchers”.
• Competent patients are an asset, not a threat.

Reason 7: “We are giving patients a chance to contribute to research / future patients / their own community”

This frames participation as a gift to the patient rather than a contribution to the project. It suggests that the opportunity to be involved is itself a form of compensation, shifting attention away from the value the patient adds. In doing so, requested work is seen as a favor granted, rather than expertise sought.

Counterarguments

• Being invited is not compensation when real work and expertise are requested.
• Calling it a “chance to contribute” reframes sought-after expertise as a favor instead of a contribution.
• It is frankly unethical to try to shame patients, who often are struggling with illness, worry and financial hardship, into contributing for free.

Reason 8: “Patients benefit from participating”

This is an especially infuriating argument, that patients should not be paid because they get benefit from their contributions in the form of strengthening of health and motivation. This argument suggests that any personal health gains a patient might experience from being involved somehow replace the need for compensation. It implies that improved understanding, empowerment, or a sense of purpose is “payment enough.” By that logic, however, no one whose work is meaningful, educational, or professionally rewarding would ever need a salary.

Counterarguments

• Researchers also benefit personally from salary and career advancement. So, by the same logic, they should also not get paid.
• Personal benefit does not negate that something is work.
• Self-interest does not disqualify work—otherwise no one would be paid.

Reason 9: “Compensation could attract the ‘wrong kind of patients’”

This argument assumes that financial motivation makes participation less genuine, as if only those who can afford to contribute for free are the “right” voices. In practice, it means that unpaid involvement filters out anyone without spare time or financial flexibility. Rather than protecting quality, it quietly ensures that only the most privileged patients are able to take part.

Counterarguments

• This argument is never applied to professionals.
• Compensation enables participation from those who otherwise cannot afford it.
• Without compensation, you only recruit the economically privileged.

Reason 10: “Patients don’t know enough about what we do for us to pay them”

This argument suggests that patients lack the technical understanding required to warrant compensation, as if payment were reserved only for formal expertise. Yet patients are invited precisely because they bring a different kind of knowledge—about living with a condition, navigating care, and seeing gaps professionals may overlook. Dismissing this as insufficient knowledge overlooks the very reason they were asked to contribute in the first place.

Counterarguments

• Patients are invited for what they know that professionals don’t—not for what they lack.
• You’re compensating contribution and time, not academic credentials.
• If their knowledge isn’t valuable, they shouldn’t be in the room in the first place.

Reason 11: “We’ve never paid patients before”

This argument rests on tradition: it has always been done this way, so it feels natural to keep doing it. But history mostly tells us how things used to work—not whether they still make sense. Many of the improvements in patient involvement have come from challenging exactly these old routines.

Counterarguments

• Tradition is not an argument in knowledge development.
• Patient involvement as a field exists precisely to change past practice.
• Historical practice is the reason patient knowledge has been underused.

Reason 12: “Not all patients want to get paid” or “Not all patients are able to accept payment”

This argument points out that some patients prefer to contribute without compensation, or may be restricted by benefit rules or employment status. While this may certainly be true for some individuals, it turns a personal choice into a general rule for everyone. The fact that a few people are willing—or forced—to work for free does not mean that unpaid work should be the norm.

Counterarguments

• Individual preference should not define the norm for everyone else.
• The option to decline payment is fair; the absence of payment is not.
• Basing the system on who can afford to work for free excludes those who can’t.

---

These additional reasons have been added as a result of comments and feedback:

Additional reason 1: “We can’t pay you, but you’ll get great connections by speaking at our conference”

This frames visibility and networking as a substitute for compensation. It assumes that exposure, contacts, or prestige are adequate payment for preparation time, travel, and sharing expertise. In practice, it mirrors a pattern where patients are expected to trade real work for intangible benefits that primarily serve the organizer.

Counterarguments

• Exposure and networking do not replace compensation for time and expertise.
• Professionals invited to speak are rarely asked to accept “connections” instead of payment.
• If the talk creates value for the conference, it deserves proper compensation

Additional reason 2: “We can’t pay you, but you can use our app/AI bot/system for free”

This argument reframes access to a product or service as a form of compensation. It treats the patient’s time and expertise as something that can be exchanged for exposure, testing access, or early use of a tool. In reality, this shifts the relationship from collaboration to unpaid product testing, where the patient’s contribution creates value for the company or project without any financial recognition.

Counterarguments

• Access to a product is not compensation for professional input and time.
• This turns patient involvement into unpaid user testing.
• If the tool has real value, it should be offered in addition to fair compensation—not instead of it.

Additional reason 3: “We can’t pay you, but why don’t you fundraise to cover your own costs and then contribute for free?”

This argument asks the patient to take on the financial responsibility for enabling their own participation, while everyone else is paid from the project’s budget. It turns involvement into a personal funding problem and shifts the burden of resourcing the project onto the very person whose knowledge is being requested.

Counterarguments

• Asking someone to fundraise to work for free reverses who is responsible for resourcing the project.
• No other contributor is expected to secure their own funding to be allowed to participate.
• If the contribution is important enough to ask for, it is important enough to budget for.

Additional reason 4: “We’d love to pay you – but how?” (followed by silence)

This starts as apparent goodwill: praise for your contribution and an expressed intention to compensate you. You provide the requested invoice or details—and then nothing happens. Months pass. A year later, you’re warmly invited back because your previous input was “so valuable,” while the earlier payment is still unresolved.

Counterarguments

• Good intentions without follow-through are functionally the same as not paying.
• If an organization can manage contracts and payments for others, it can do the same for patients.
• Unpaid past work should be resolved before new involvement is requested.

Additional reason 5: “If you won’t do it, we will find someone else who will”

This argument relies on the fact that some patients, out of goodwill, passion, or necessity, are still willing to contribute for free. It shifts the focus from fairness to replaceability, implying that the issue is not the value of the contribution but the willingness of someone to accept unpaid work.

Counterarguments

• The availability of unpaid contributors does not make unpaid work ethical.
• Replaceability does not reduce the value of the contribution.
• This approach selects for who can afford to work for free, not for who is best suited to contribute.

---

Reason 13: The unspoken underlying argument

The real, unspoken argument is probably:

“If we start paying patients, we acknowledge that their knowledge is work. And that challenges the existing knowledge hierarchy”

This is not about money. It is about epistemic status.

Counterarguments

• Yes — that is the point.
• If patients contribute to knowledge production, they are knowledge actors.
• Compensation is an organizational recognition of this.

This is about how we view knowledge, not about money.

Here is an argument that can be used to close:

Either this is a real contribution to research and healthcare improvement — and should be compensated.
Or it is symbolic participation — and we should be honest about that.

Which ones have you heard? Have you heard any other arguments for not paying patients? Let me know in the comments.