At a recent international conference session about how to involve patients and elicit patient views for consideration during decision making around the provision of health services, a representative of a patient group made a statement that initially angered me, then left me upset and emotional. The statement was that patients who are health professionals were not able to be considered as representatives for that patient group in decision-making fora.
As a health professional who has a chronic health condition that I am still struggling to come to terms with, I came out of the conference session feeling that the very groups that purport to support patients had just negated me, my experiences, and my concerns. I had been thinking of contacting and perhaps joining a local patient support group, but now I am concerned about how common this opinion is. Will I be welcomed by my local group? Will I be listened to as a person or dismissed as someone who's opinions or experiences are less valid than others?
It has taken me a long time to find the courage to approach the local patient group, because my past experience of being a health professional with health problems has not been an altogether positive one. Staff either hurry past me, or assume that I know everything already and don't need the basic information that other patients receive. In situations where I am vulnerable, as you can be as a patient, I am reluctant to ask all the questions I have in case I am seen as a demanding patient or as taking time away from more deserving patients.
Almost everyone will become a patient at some point in their lives and some, like me, will live with a chronic condition for years. Each patient brings to every new situation their prior experiences, knowledge, skills, moral framework, and social systems. I believe that the job that someone has or the role they play in their family or society should be just one more experience to add, not the sole arbiter of how a person experiences or perceives or adapts to a problem or situation.
I assume the situation must be similar for other professionals when their personal and professional lives cross. I imagine that being a parent who is also a school teacher can lead to similar wariness on both sides, when talking to your child's teacher about their progress at school. But does this mean that a parent who is a teacher cannot be a board member of the parent-teacher association?
I can see that my skills in health technology assessment and my background as a doctor in general practice and later public health would put me in a privileged position as a patient group representative in the decision-making arena. I can see that it would be possible to exploit this - if I were that sort of person - when talking to other patients or lay committee members without this background, but that pre-supposes the motivation and low professional values.
Do patient groups or their individual members feel threatened by “health professional” patients? Do they think that “ordinary” patient's opinions will be overwhelmed if “we” are allowed in? Do they believe that health professionals cannot represent other people's opinions and experiences? If that is so, how can anyone represent anyone else's opinions or experiences other than their own? Is this opinion widespread or confined to some patient groups only?
If this were an opinion developed after a bad experience with an overbearing health professional patient, then I can understand their reluctance, but that experience should not be used against all such patients. We should work toward a meaningful dialogue between those with experiences and healthcare decision makers. A more inclusive approach may support a more meaningful communication.
