Who do patient representatives represent?

Lynch and Largent discuss the contribution of patients—current and future—to regulatory approvals for promising new medicines, but they overlook a key point: the independence of the patients who represent the consumer voice.1 European drug companies invest heavily in patients’ groups. This is not a new concept,2 but one that is expanding rapidly, particularly in the area of rare diseases. One of the activities of patients’ groups is to lobby politicians and regulatory bodies. The European Patients’ Academy on Therapeutic Innovation is funded mostly by the drug industry.3 It “provides education and training to increase the capacity and capability of patients and patient representatives to understand and meaningfully contribute to medicines research and development.” It has trained more than 250 patient experts. EURORDIS-Rare Diseases Europe “strengthens the patient voice and shapes research, policies, and patient services.”4 It too is sponsored directly and indirectly by the European drug industry.The extent to which…
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