Power to the Patients

While other industries take as their focus such shallow concerns as the making of money, the health care profession prides itself on dealing with matters of life and death. But that’s not the only thing distinguishing health care from other industries: it is also unique in the extent to which it excludes consumers from important decisions. Employers predetermine which health plans are available to you; insurers select what network of physicians you can see. Bring your own health research to the doctor’s office, and you might be labeled a nuisance patient. Question your doctor’s recommendations, and you could be called noncompliant or difficult.

Doctors and patients alike are accustomed to the firmly entrenched Doctor Knows Best status quo. But it is only by empowering patients – entrusting them with greater responsibility and putting opportunities for self-directed care into their hands – that health care can be made significantly more efficient and effective. It's a bit late, of course, to work patient empowerment into the various proposals now wending their way through Congress. But anything that can be called true reform may be impossible without it.

Already, advances in scientific knowledge and medical technology are enabling some patients to monitor their health and control their own diseases. Insulin-dependent diabetics, for example, quickly learn how to manage their blood glucose levels at home by matching their insulin dosage to changes in their diet and physical activity. Many diabetics have also joined online communities to share information and advice, sometimes viewing each other as more trusted advisors than their own doctors. Diabetics who take their health in hand in this way find that the cost of care decreases dramatically, while the quality increases: it’s far more effective than relying on experts whom they may see only every few months.

This kind of consumer empowerment has similarly transformed a number of other industries. Rather than hiring accountants, for example, many now turn to software programs like TurboTax and QuickBooks to do taxes or manage small business finances. And instead of calling a stockbroker or visiting a bank branch, many routinely do trading and banking online.

Likewise, while travel agents still provide valuable assistance with complex arrangements, most people now plan and book their trips themselves. Rather than using real estate agents, many homebuyers and renters turn to Craigslist or other “For Sale By Owner” web sites. Instead of visiting multiple dealers, car buyers, too, now do most of their research and comparison shopping at home. This pattern of cutting out unnecessary middlemen by empowering non-experts, sometimes called "disintermediation," is part of a process we’ve termed “disruptive innovation,” and it’s vital to making costly products and services much more affordable over time.

Given all this, shouldn’t the health care system be able to do for all patients what it’s already done so effectively for diabetics?

An obstacle thus far has been an entrenched set of paternalistic attitudes on the part of health care providers. The health care system, after all, is designed to address our most complicated medical problems, which is why becoming a doctor requires such rigorous, sophisticated training. But this leads to a general sense on the part of physicians that health care of any kind is too delicate a matter for non-experts. And while there’s no question that complex medical procedures and assessments should remain in the hands of professionals, there is much that could be effectively dealt with by patients themselves.

One area where patients could become more involved is in the management of their own medical records. Health records have long been considered holy scripture—to be modified and interpreted by nobody less than a health care professional. But patients could be valuable contributors to their health records if only they were allowed access. Understandably, the notion of health records becoming fully accessible to and modifiable by patients – as well as portable across different health systems—raises concerns among some providers about accuracy and privacy. But patients ought to be viewed as partners in managing and keeping track of this information. After all, it’s in their own interest to ensure that their records are accurate and complete. And if implemented properly, patient-controlled records could relieve providers of many of the administrative headaches related to maintaining and securing health data.

Another opportunity for patient empowerment lies in online patient communities. Some professionals regard interactive medical web sites with suspicion, fearing that they enable the spread of misinformation among laypeople. This worry is not unfounded, but the simple fact is that patients are already drawing upon user-generated content, like Wikipedia and online discussion boards, to gather health information. Rather than trying to shut these sites down or ignore them, physicians could actively participate, thereby offering correctives to any misperceptions. Clearly there’s a market for it: patients have been creating these communities precisely because they’re clamoring for information that they’re not getting from their physicians. And in the event of a pandemic or other widespread health emergency, accurate information could more efficiently be dispensed in this way than by speaking with one patient at a time.

Finally, implementing a ratings system for health care providers would empower not only patients (who could make more informed choices about whom they want to see) but also doctors, who could fine-tune their services in response to feedback. Most physicians have so far resisted any type of consumer ratings system because they believe that patients aren’t qualified to judge them. But while that may be true in some respects, there are plenty of service-oriented aspects of the clinical experience that are important to patients, but which are too often ignored by providers. Other industries ignore service flaws at their peril. Health care should be no different.

Real reform will only happen if we are willing to upend existing models. But if it’s only the usual stakeholders who are brought into the reform process, change will end up being merely incremental, because hospitals, physicians, and other health industry groups simply can’t imagine a world without them in it. As Henry Ford once said, of his invention of the automobile, “If I had asked people what they wanted, they would have said faster horses.”

So far, there’s no general patient lobby that receives the same attention, or possesses the same financial resources, as the American Medical Association and American Hospital Association. But surely if more patients realized how much influence they could have in their own care, they would discard their roles as passive health care consumers, and would instead become its agents of change.