To be a patient today is to be treated as a consumer. But treating patients as typical proactive, in control, well-informed 
consumers can backfire. Asked to take on increasingly complex decisions and digest ever-larger amounts of information, patients find themselves placed — often by design — in the driver's seat. High-deductible insurance plans aspire to make the cost implications of care more transparent and implicitly shift decision-making to members. The "empowered patient" movement encourages patients to become hyper-informed and to take control over their care. But providing greater information, access and autonomy — so often successful in consumer settings — does not necessarily drive better care or experience. Consider these cases:
- An unexplained black-out sent a 61-year-old Boston woman to the emergency room and set off a flurry of visits to specialists to uncover the cause. Each doctor needed records of the diagnostics from previous visits. Hospital policy, however, required that patient data be released only to the patient, meaning she had to return to the hospital prior to any new specialist visit. Requiring her to control the information flow burdened her in the midst of a medical crisis.
- After years of struggling with her weight, a New York mother underwent bariatric surgery. She was inundated with information from her medical team about how she would need to change her behavior. Guidelines around when, how, and what to eat or not eat — the rules were overwhelming and constraining. Before long her weight had jumped again. For this woman, an excess of information (along with an assumption that she was prepared to absorb it) was part of the problem, not the solution.
- In a New Jersey health clinic, patients were calling 911 for minor illnesses and injuries, rather than the clinic's 24-hour line. Even when clinicians asked patients to program the clinic's number into their cell phones, 911 calls remained constant. Expecting patients to be proactive in this case was unrealistic; it took clinicians programming the number into patients' phones for them to change their behavior and reduce 911 calls, saving money and resources.
We see three main reasons why treating patients as consumers can create problems.
- Patients don't want to be there: People don't seek out healthcare without a reason. Something is wrong and patients want to solve it and get back to normal. When patients are required to be proactive decision-makers, the health care system is often casting a very reluctant hero into the role.
- Patients aren't equipped to be there: Even when patients are willing to be decision makers, they may not have the tools. At a time of unusual stress, the system asks them to absorb technical information and make difficult decisions that require specialized expertise.
- Patients aren't in it alone: To design for patients alone is to forget that they are part of a complex system and aren't often independent decision-makers. Decisions are shaped by other stakeholders: friends and family who support the patient, the insurance company who foots the bill, practitioners who provide care and expert advice, the hospital administrators who inform system-level protocol, and so on.
When the people who design health-care delivery understand the difference between a patient and a consumer they can create more effective experiences.
For example, a series of diabetes decision aids developed by the Mayo Clinic Center for Innovationexemplifies how to design for patients as patients. Treatment decision cards use plain language and clean graphics to represent costs, risks, side effects, daily routines, weight change, and other considerations for common diabetes treatments. The tools help to align expectations around the many facets of treatment and provide a metered amount of information pertinent to the options at hand.
Most importantly, the intent is not to saddle the individual with the burden of the decision, but to help patients and providers work together to make decisions about treatment. The cards are designed to provide a mechanism for discussions around trade-offs and lifestyle considerations, providing an avenue for conversations around weight, blood glucose testing, daily medication regimen and behavioral changes that are fundamental to learning to live with diabetes. They are tools to enable a dialogue, meant to be used by the doctor-patient team, rather than guidelines or directives handed off to the individual.
The program acknowledges that treatment needs to be doable, rather than ideal. A clinical trial piloted the decision aids in a randomized group of clinicians; a second group provided usual care with an educational pamphlet. The six month trial demonstrated that patients who used the cards were more knowledgeable than usual-care patients, and more involved in the decision-making around diabetes medications.
As health-care delivery undergoes a profound transformation, the reflex to put patients in the driver's seat can result in poorly designed delivery systems that don't necessarily improve care or reduce costs. Health-care systems, providers, policy makers and designers need to take a step back and assure that in their eagerness to "consumerize" the medical experience they don't undermine the quality of care by demanding more of patients than they should be expected to deliver.
