To the Editor:
A healthcare professional expressed anger and dismay in response to a comment reportedly made by a patient group representative that “health professionals (even those who are also patients) were not considered as representatives for patient groups in decision-making fora.” I have heard this sentiment before and always believed it begs the question, “What qualifies one to be a patient representative, and are there any disqualifiers?”
Obviously, not just anyone who has a health condition could appropriately represent the “patient perspective” in a decision-making context. He/she would need to know the views of the patients affected by the decision and also be able to represent these views in a multi-stakeholder forum. He/she potentially could be a board member or staff of a patient organization.
Presumably, in a multi-stakeholder forum, the patient representative would advocate for the best interests of the “recipients” of healthcare in the same way as others advocate for the interests of the “regulator,” “public payer,” the “healthcare institution,” and the “healthcare provider.” Could the reviewer, the bureaucrat, the administrator, or the health professional also be a patient? Based on the statistics, at least half of them are. However, they participate in their professional roles, not their personal roles.
The representative for the patient presumably also has other roles in life, but he/she will be speaking in the role of patient. He/she could be a teacher, a chef, a housekeeper, bank executive, lawyer, politician, and, yes, even a dentist, pharmacist, nurse, or doctor.
There are obviously many advantages to having patient representatives at the decision table who can easily understand the perspectives of the other stakeholders and who are respected by the others. There are, however, two key challenges for the patient representative who also has (or had) one of the other stakeholder roles. Can he/she manage the potential conflicts of interest and strongly advocate as a patient? More importantly, can he/she maintain the trust of the patients represented? In reality, these are personal qualifications for any patient advocate, and not all patients have them. The health professional chosen to represent patients just has to work a little bit harder to demonstrate them.
