Despite advances in industry integration of the patient voice into everyday practice, there is still a discrepancy over the monetary value placed on patient insights. Remunerating patients fairly for their input can have a particularly big impact in the rare disease community where patient engagement is a unique challenge. How can industry better address this challenge?

As an industry, we need to ensure patients, families and advocates are equitably compensated for providing insights at our request, comparable to what is received by healthcare professionals. This means the need to re-evaluate fair market value (FMV) guidelines to better fit different categories or tiers of consultants. Currently, payments to healthcare professional consultants are routine and transparent based on criteria including training, publications, experience and the like. Criteria will need to be adapted to include patients, vital stakeholders in our changing healthcare environment, to ensure equitable reimbursements for valuable insights, regardless of company size or where it is currently in its stage of development.

This is especially important in rare disease communities in which a smaller pool of patients and advocates exist. A small, seemingly never changing subset of rare diseases patients and advocates are often used on heavy rotation, making their time even more valuable. As patients are rightfully demanding care and solutions that are coordinated, convenient, customized and accessible, patient perspective is critical and requested earlier and earlier in the drug development lifecycle.

Rare Disease and the Patient Voice

Patients living with a rare disease offer a unique vantage point and provide qualitative knowledge through their own authentic and informed patient voice. This shifting healthcare landscape is creating more demand for patients to consult on everything from advising on clinical trial design all the way to feedback on educational and support resources.

Developing a new standard set of guidelines, inclusive of the role of patients, is essential as industry engages with more patients, consumers, and families. Establishing FMV for consulting services from healthcare providers in an industry setting is already a complex exercise given the tightly regulated environment and potential penalties.

However, pharmaceutical companies that compensate healthcare professionals for activities such as advisory boards and speakers’ bureaus, need to conduct the same level of diligence for patients participating in similar activities. This is especially important in rare disease communities where thoughtful insights are hard to come by based on the limited patient pool. If new standard guidelines are introduced to ensure equity, industry pro-activity is essential, not optional. We must come to recognize and compensate the value of patients’ insights as much as we do of healthcare providers.

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