Beneath the progressive rhetoric extolling the virtues of patient partnership in health research lies an uncomfortable truth: patient partnership is largely unpaid volunteer work.
The expectation that patients contribute their expertise, time and often their trauma without compensation reflects a quiet but persistent inequity: True partnership means valuing all expertise and all contribution: this requires equitable compensation for lived expertise. Otherwise, we perpetuate the same inequities patient engagement was meant to address.
When scientists, clinicians and administrators gather “around a table” to design a study, they are compensated for their expertise. When patients join the table, they often are expected to volunteer. One patient-partner committee reported contributing more than 3,000 volunteer hours in one year, illustrating the extent to which health research quietly relies on uncompensated labour. In a report of the Canadian Patient Partner Survey, more than 80 per cent of patient partners were not paid. Most are offered non-financial methods of compensation. The irony is striking, especially given the benefits of patient involvement such as improved recruitment and retention, outcome selection, knowledge translation and greater applicability of findings.
Lived experience is valuable enough to be given a seat at the table, but not valuable enough to be compensated. This double standard normalizes patient partnership as a checkbox exercise that reaffirms existing hierarchies instead of dismantling them.
Lived experience is not anecdotal; it is a distinct and essential form of expertise. Patients and/or caregivers develop a deep understanding of the clinical manifestations of the disease, system gaps, operational challenges and treatment burdens. Their insights often reveal dimensions of illness and recovery invisible to those trained within biomedical frameworks. Recognizing this experiential knowledge as expertise means acknowledging that it deserves respect – and remuneration – just as professional expertise does. When we ask patients to co-design studies, interpret data or shape policy, we are drawing on intellectual and emotional labour. To ask for this labour without compensation is to devalue it.
Unpaid partnership systematically excludes those who cannot afford to donate their time – individuals juggling multiple jobs, caregiving responsibilities or living with economic precarity. In practice, this means that those most marginalized by the health-care system are least likely to have input. Patient voices become filtered, narrowing the range of perspectives that inform research and policy. The diversity gap in patient partnership further underscores the urgency for change. Racialized communities, Indigenous peoples, persons with disabilities and gender-diverse individuals remain underrepresented.
Two common concerns arise when discussing compensating patient partners: 1) that compensating patient partners might undermine the authenticity of their contributions; 2) that individuals may misrepresent their lived experience to gain compensation.
This first represents a clear double standard in that it applies to patients only; compensated physicians and researchers are presumably able to contribute with authenticity. This implicitly defines the patient as “lesser.” Misrepresentation is a more valid concern, especially given that lived (vs. professional) experience is less verifiable. Misrepresentation certainly occurs in research settings.
Similar ethical dilemmas have been discussed regarding clinical trial participation. However, patient partnership – if routinely remunerated – would cost less than clinical trials given no physical risks and lower time commitment. Further, by nature of the expertise required, these opportunities are less prone to misrepresentation and “double dipping” is less of a concern when one provides expertise versus receives treatment. Still, this risk is real but minor compared with the ethical imperative to ensure fairness and inclusion. There may also be concerns and barriers to receiving payment on the patient side. For example, patients receiving long-term disability payments often have limitations in terms of activities or remuneration through their insurance.
There are means to address these concerns. Compensation is just one component of a patient-scientist relationship that requires a foundation of clear and open communication. Potential patient partners can be interviewed and have their experience verified, as is typical for any role involving compensation. Then, relationship building must take place to ensure comfort in having honest conversations around compensation (e.g., type and amount) that can otherwise feel awkward. The onus should be on scientists to start these conversations, including discussion of potential inequities.
Funders and institutions can drive systemic change. Fair patient compensation should be required in grant budgets. Institutions should adopt transparent pay scales that reflect patients’ time, expertise and emotional labour. Several organizations have frameworks for equitable partnership (e.g., Canadian Institutes of Health Research, Strategy for Patient-Oriented Research, Canadian Cancer Society, The Change Foundation).
Addressing these complexities likely requires research, including interviews with patient partners and testing different compensation models. Determining fair patient compensation will be an iterative process, but we must start now.
