Many years ago, Alfred Korzybski wrote that "the map is not the territory." Gregory Bateson went on to argue that the map, which represents reality, is not the reality. This distinction has implications for the role of patient voice in health care planning and policy.
Today, many organizations are making serious attempts to include the patient voice in policy and decision-making. Unfortunately, more than a few of them are doing this by asking for advice or soliciting members for committees from organizations they perceive to represent patients such as the American Cancer Society or the Arthritis Foundation. The use of these organizations as patient representatives has several fallacies.
First, while many if not most disease-specific voluntary health organizations claim to represent the interests of patients, they do not actually represent patients. For example, the Arthritis Foundation says that its mission is "to improve lives through leadership in the prevention, control and cure of arthritis and related diseases." The American Cancer Society has a similar mission statement wherein "representing patients" is not mentioned.
Second, most patients are not members of disease-specific organizations and those who are members (or volunteers) seldom have input into the day-to-day running or policies of the organization. There is seldom a requirement that patients fill policy-making, membership or staff positions.
These organizations want to help patients by finding cures for their diseases and often contribute significantly to this aim. As a result, the organizations know a great deal about the diseases whose cure they champion and the needs of the patients who have those diseases. However, just as the map is not the territory, knowledge of patients and disease do not make these organizations patient representatives, any more than health professionals, in their efforts to heal patients, represent the voices (and experiences) of those they care for. Even when such an organization sends a patient to be its representative, there is a conflict of interest: Does that person speak for themselves and fellow patients or for the organization?
Finally, disease-specific organizations may have a conflict of interest because of their funding sources. While it is true that many have a large patient donor base, most organizations also receive funds from pharmaceutical and medical device companies. Although many health professional and health care organizations have policies about receiving industry funding, such policies are seldom clear with disease-specific organizations. Thus, having these organizations represent patients when major funding comes from non-patients and industry is a conflict of interest.
When I have discussed where to find good patient representatives with leaders in health care, health policy organizations and government organizations, a couple of concerns emerge. These organizations do not know where to find patients. Nor do they believe that patients would be willing or capable of helping them in their scientific and policy deliberations. They often talk about the need to train patients. Funny thing: I have never heard them talk about training their staff or boards to work with patients or mention the possibility of co-training patients, other stakeholders and organization representatives. For most organizations, the ideal patient representative is one who is easily available, willing to donate time, not angry, easily defers to the expertise of health professionals and is mostly quiet. In other words, they want a patient whose presence legitimizes the claim that their decision or policy was based on broad representation and that allows them to check the patient-centered box without too much trouble.
I admit that it is not easy to include patients in many types of formal expert advisory processes. However, I suggest that if organizations and policy-making bodies truly want a patient voice then there are several steps they should consider. First, they should cast a wide net for patients as PCORI did when they selected their patient advisory board. Second, they must recognize that those designated by health voluntary organizations do not represent the voice of the patient and should not be in a position to do so, regardless of how many focus groups or surveys they sponsor or pamphlets that organization produces. Only a patient can represent a patient. Third, if patient input is truly desired, the aim is not to train patients to conform to the demands of existing practices. Rather, patients should be co-trained with health professionals, policymakers and administrators to work together in this new role.
I applaud the attempts to include patient voice in all manner of deliberations about the future of health care research and delivery. But few people know how to truly integrate the experiences and perspectives of patients into deliberations about research, policy and health care practice well. There will be many false starts and bumps as we learn how to do it. As we go along, let us remember that the map is not the territory: Speaking on behalf of patients is not the same as speaking as a patient.
Stronger efforts must be made to get real patients to add their voices to the chorus.