Paying patient representatives is not a “nice extra” that is occasionally offered for participation. Patients and patient representatives bring lived experience and unique insights that are essential in advisory boards, working groups, guidelines, and projects.
Compensation acknowledges this expertise as equal to that of professionals. It communicates that their knowledge, time, and voice are valued in the same way as other contributors. All patient representatives engaged in organizational projects, advisory boards, research, or working groups should receive fair compensation for their time, expertise, and contributions.
Valuing Time, Energy, and Commitment
Paying patient representatives ensures their contributions are not taken for granted. Compensation enables participants to dedicate the necessary time, energy, and focus to their work.
Patient representatives should be considered co-creators, not symbolic participants. Fair compensation supports genuine collaboration and enables shared decision-making. It reflects respect and strengthens relationships between all stakeholders involved.
Lived Experience Is a Unique Form of Expertise
Patient representatives bring lived experience that no professional training can replace. Their insights are critical in shaping meaningful, patient-centered decisions.
Clinicians, doctors, researchers, consultants, and other professionals are compensated for their knowledge and involvement. Therefore, the insights and contributions of patient representatives deserve the same level of respect. They are also experts.
Ensuring Fairness and Equity
Asking patient representatives to contribute their time, emotional perspectives, personal stories, and involvement in decision-making without compensation is not fair. Payment makes it clear that their input is valued and that their work has real importance.
Compensation allows patient representatives to prepare properly, attend meetings, invest energy, and engage as equal partners in discussions and decisions.
Supporting Meaningful and Sustainable Engagement
When patient representatives are compensated, organizations benefit from more reliable, thoughtful, and impactful contributions.
Their participation often involves reviewing documents, attending long meetings, and sharing personal or sometimes traumatic experiences. This is real work and can be emotionally demanding. It should be recognized and compensated accordingly.
True Partnership
Paying patient representatives helps shift the approach from “We have already consulted patients” to “Patients are part of our team.”
Compensation reinforces that patients are co-creators, not symbolic participants included only to fulfill requirements. It promotes authentic collaboration and shared ownership of outcomes.
Building Trust and Ethical Engagement
Organizations that compensate patient representatives send a clear signal of respect and ethical engagement. This approach helps build long-term relationships and trust.
Fair compensation is a fundamental part of meaningful patient involvement and reflects a commitment to equity and inclusion.
Better Decisions, Better Outcomes
Projects that include well-supported patient representatives are more likely to address real needs, be more acceptable to patients, and succeed in implementation.
Paying patient representatives is not a cost. It is an investment in better decisions and improved outcomes.
If everyone in a project, organization, or group is paid except patient representatives, the message is clear in a negative way. Compensation communicates that patient representatives’ voices matter as much as anyone else’s.
Paying patient representatives is about respect, equity, and ultimately achieving better results.
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Written by Eva-Maria Strömsholm,
Co-founder and Vice Chair, Gynecological Cancer Patients in Finland Patient Representative, Cancer Patient, Patient Advocate Nurse,Teacher, MSc in Developmental Psychology