Frances Purdy is the Director of the Certification Commission for Family Support at the National Federation of Families for Children’s Mental Health.
What if patient-centered was patient-directed or, even better, person-driven? This is not just semantics but the progression of making research truly meaningful to those who must live with the results of the research (and by logical extension, treatment or lack of treatment). Using the term “patient” describes the role of the person who is subject to treatment or care. As the parent of a child, neither she nor I ever utilized that title. Even in the emergency room, we were less than 50% “patient” since our goal was not merely to fix the health care problem but rather to quickly get back on the path to wellness, physical and emotional. We were patients for a limited interval in our lives. Especially in the arena of emotional health, it is the person involved in a community that is being involved, not just the person who has a difficulty, symptoms, or illness. It is an affirmative world view that patients are whole persons, more than the portion that is attended to as a result of some medical necessity or intervention. A patient is transitory. The person is wholly interested and involved.
And why directed instead of centered? One goal is to have shared-decision making based on equal access to information. Not some information. All information. But how is shared-decision making to take place when patients are only transitory participants, in part, because others do have the role as the major decision-makers (funders, researchers, administrators). While striving for equality, the balance of power is skewed toward those who have roles that make decisions and will continue to be in those roles. So, this takes us back to the first point, patients generally do not make being a patient their life work and as such are transitory in the process.
To change the fulcrum in this balance of decision-making, we could place the emphasis on persons who have experience with something that needs research. They would drive the process and could pull the final trump card. Only then would the goal of having outcomes that truly reflect the needs of patients be finally achieved.