To the Editor:
As a health technology assessment body committed to active patient and public involvement, we at the Scottish Medicines Consortium (SMC) have considered the question above and the views expressed by Dr. Claire Packer and conclude that the answer is “Yes.” As Dr. Packer notes, no patient representative can ever be purely a patient with a specific condition as everyone brings other life experiences, including but not limited to their employment, to their understanding, and perception of their condition. A background in health care will provide different experiences from other backgrounds, but these experiences bring added breadth to the patient perception and, thus, enhance any health technology assessment or other decision making in the health arena.
Clearly a patient with a background in finance, education, or manufacturing industry would bring different experiences, but these are no more (or less) valid or valuable than the experiences of a healthcare professional. Importantly, patient representatives in healthcare decision making have a role to represent as wide a range of patients as possible and not simply themselves. This is a difficult challenge and one which no organization has fully resolved, but there is no reason to expect that a patient with a healthcare background would be any less able to fulfill this role than any other patient. Involvement of several patients from different backgrounds is ideal, and where established Patient Interest Groups already exist, their involvement (subject to appropriate declarations of interest) can be very helpful and avoid over-reliance on individual patients. No individual sub-group of patients should be systematically excluded from the process.
As Dr. Packer notes, healthcare professionals experience the same range of emotional and psychological responses to the development of both acute and chronic illness as other patients, and may struggle to find the support and help that they need. To suggest that their experiences have no relevance or value in healthcare decision making is entirely inappropriate.
