Ethical Patient Engagement
Many organizations say they are patient-led or patient-informed, but good intentions are not the same as ethical practice. Patients are often invited to speak at events without being paid fairly, included in real decision-making, or given a clear say in how their stories get used. T1International built these principles to help organizations turn good intentions into real, respectful partnership with patients.
Six questions for ethical patient engagement
No one understands a chronic condition better than the person living with it every day. These six questions can guide any organization toward truly ethical patient engagement:
- Are you compensating patients as experts? Patients should be paid the same as other expert speakers and reimbursed for travel, lodging, and other costs.
- Have patients been involved in planning, leadership, and strategy from the start? Bringing patients in only at the end, to share a sad story or support a decision that was already made, is not real engagement.
- Have you told patients the purpose of their participation? Patients deserve to know why they are being asked to speak, what topics they will cover, and what is expected of them, before they agree.
- Are patients aware of who is funding the event? People with diabetes deserve to know if pharmaceutical or device companies are sponsoring an event, so they can make an informed choice about participating.
- Are you working with the same few people again and again? Real engagement means reaching out to more people, in more regions, and offering support like translation and flexible scheduling so more voices can be heard.
- Is there a clear plan for how patient input will shape future work? Patients give their time and trust because they believe it will lead to change. Engagement without follow-through causes harm.
Use these principles to build genuine, lasting partnerships with the patient community, grounded in respect rather than tokenism.
There is always an important role for the expert, the policy researcher, for those gathering evidence. But there will be very little change if you don’t have direct patient advocacy to decisionmakers.
–Diarmaid
Just Treatment
United Kingdom
