Although often used interchangeably, there are distinctive differences between consumers and patients in the context of health care. Much is made of what to call those of us actively engaged in pursuing and receiving medical care from health professionals, and this post does not intend to settle that issue. But after reviewing countless new conferences, pieces of legislation or regulation, coalitions, job titles and grant opportunities, I've discerned a shift towards using consumers as the catch-all term to describe what are actually segments with different experiences, needs, views and behaviors within the health care system.
Too often, I see the few seats at the table begrudgingly opened to non-physician, non-academician or non-corporate parties are filled by labor unions, general consumer groups and organizations whose average members may not have visited a doctor in years. Organizers, though, feel satisfied in checking off the patient representation box.
Consumers, in my personal dictionary, are members of the general public. Consumers may be perfectly healthy (or think they are) with little contact, or desire to be in contact, with the medical system. The term consumer is also associated with rational, non-urgent, cost- and feature-comparison activities demonstrated in other industries with more transparent information sharing.
Patients, acute patients for the purposes of this post, are people with some illness or injury necessitating an interaction with the health care system. They are not electively consuming goods or resources, but trying to secure the more effective treatment with the least amount of pain, time and cost (if there is a choice or information). Their experience with clinical settings and information may be short-lived and soon forgotten. If there was no error or incidence involved, patients may return to their lives without having been significantly shaped or changed.
Patient Warriors, those patients with chronic diseases, diseases that are potentially terminal or that leave life-changing and to whatever degree life-defining marks (visible or invisible), offer something fundamentally different to the conversation. Experiences over two decades with three conditions at four institutions with five (to the nth power) physicians, nurses, fellows, medical students and techs are quantitatively and qualitatively richer than that of an acute patient or a consumer.' Their cost calculations are too often: Should I buy food or medicine? Should I bankrupt my family to save my life? Should I pay these medical bills or my mortgage?
There is a great need from a population health perspective to reach all three segments, but the approaches and expectations of each should be varied. Moreover, they cannot be substituted for one another for research, policymaking or other purposes.
Consider these questions:
- Do consumers want access to their personal health records?
- What role do patients want to play as part of their health care team?
- Can patients be experts?
- What is the consumer perspective on comparative effectiveness research?
These questions are almost meaningless as asked. Consumers may not care one whit about access to a personal health record, but it may mean life and death to a patient warrior. Patients (subject to individual preference and temperament) may want to be informed while patient warriors may want to be perceived as full partners or have endured for so long they just want the key decisions while they maintain a positive mindset. Patients may not be interested in becoming experts. Patient warriors (often E-patients) may spend hundreds or thousands of hours reading, attending medical conferences, and questioning other patients and physicians. Consumers may consider comparative effectiveness research as commonsensical as having Consumer Reports for other products and look forward to cost-savings. A patient or patient warrior may be skeptical that a personalized treatment option may be made inaccessible to them.
The extent of interaction with the health care system and impact of health issues on someone's life are the defining factors in determining these population segments. If we really are to solve the myriad challenges affecting healthcare we can't afford to be lazy in our language or our thinking about ensuring that all stakeholders are truly considered and engaged appropriately.