Patient partner research has a compensation crisis

A conflict arises when healthcare institutions’ public commitment to equity collides with their internal practices. Although research teams routinely compensate their academic members and clinicians for research work, a puzzling contradiction exists: patient partners in research (that is, not research participants), whose lived experience has become increasingly central to meaningful research, face a labyrinth of institutional barriers to fair payment—if payment is offered at all.1

The current system automatically values academic expertise, while lived expertise is diminished. The rationales offered by institutions to explain unfair compensation for patient partners reveal a deeper story about power imbalances, devaluing patient experience, and institutional dynamics in modern healthcare research.2 The barriers cited by institutions include concerns about benefits, administrative complexities, and payment thresholds, which represent organisational inertia rather than genuine limitations. When institutions argue that they can’t pay patient partners because those partners might lose disability benefits, institutions make unilateral decisions that strip patient partners of their autonomy to manage their financial choices.3

Administrative hurdles around payment processing are routinely overcome when paying other research team members—implying that the real barrier is institutional will, not capability. This systemic undervaluation contradicts the principles of equity that institutions claim to champion and raises fundamental questions about how we value different forms of knowledge in healthcare research.4 We must do better to promote equity and ensure that patient partnerships are respected and compensated.

Since 2014, patient partnerships have made major strides, with patients leading successful conferences designed for their peers. These efforts have resulted in with published works that document the processes, outcomes, and lessons learnt, including guidance on co-creating conferences.5 Co-produced research and healthcare services empower users to define the scope and quality of interventions based on their experiences and preferences. Increasingly, healthcare services are co-produced through collaboration between clinicians and patients, where users define the quality of health interventions.6 Moving forward requires three fundamental shifts in how institutions approach patient partner compensation.

Firstly, financial autonomy for all professionals, including patient partners, must be respected. This includes a transparent discussion of payment options and their potential implications so that patient partners can make their own informed decisions. Secondly, institutions must provide parity by extending the same payment mechanisms used for other research team members to patient partners. This might include offering options such as consultant agreements, honoraria, or part time employment status—allowing patient partners to select what works best for them. Thirdly, the value of patient partners needs recognition. Patient partners are professional team members, not study participants.7 In an era when lived experience drives innovation in healthcare, this expertise is essential and integral to producing meaningful research outcomes.

In terms of best practices for researchers working with patient partners and funding organisations, it’s essential to understand payment guidelines to proactively tackle administrative hurdles. Consult your grants officer, other researchers, institutional leaders, or a funding body—they might offer insights on overcoming challenges. Assign a team expert to streamline paperwork and administrative tasks and provide support. When recruiting patient partners, discuss compensation options and provide alternative options for those unable to accept payments, such as supportive resources like subscriptions, course funding, or access to software.

Flexibility is key—negotiate options among funders, investigators, and institutions, and build contingency plans and flexible hours into your budget. Consult resources that outline best practices and key considerations to ensure you’re well prepared for conversations about compensation.8 In the United States, the Patient Centered Outcomes Research Institute offers guidance9 and the National Health Council provides a compensation calculator to budget time, expertise, experience, skills, and tasks.10 In the United Kingdom, the National Institute for Health and Care Research offers budgeting and compensation guidance.11 There is also a review of current guidance and policies in Canada.12

Compensation can be determined based on engagement level, skills, time commitment, and role requirements. Teams should be prepared for commitment levels to fluctuate based on patient partners’ health and life circumstances.