The elusive quest to transform healthcare through patient empowerment

by Andrew Oram

This was originally published on O’Reilly Media’s Strata blog, May 23, 2013

Would you take a morning off from work to discuss health care costs and consumer empowerment in health care? Over a hundred people in the Boston area did so on Monday, May 6, for the conference "Empowering Healthcare Consumers: A Community Conversation Conference" at the Suffolk Law School. This fast-paced and wide-ranging conference lasted just long enough to show that hopes of empowering patients and cutting health care costs (which is the real agenda behind most of the conference organizers) run up against formidable hurdles—many involving the provision of data to these consumers.

Empowering consumers is not just a nice idea that save lives. The state of Massachusetts has sort of bet the farm on it, because patient empowerment is supposed to temper the rising price of health care. David Seltz, Executive Director of the state’s Health Policy Commission, said that patient empowerment is central to the vision of the recent Massachusetts bill passed to lower health care costs, which followed on the landmark universal health care bill passed in 2006.

My first reaction to the conference was to think that, if patients are going to save the health care system, we’ll need to find a new class of patients. But of course, even though patients are notoriously immune to pricing issues (they want the best of everything, and assume they deserve it because they pay their insurance premiums), they are not really to blame. And as I gathered my notes from the conference and walked back through Boston Common and the Public Garden on a glorious Spring day, I realized that several trends—including technological ones not discussed at the conference—can make hope flower in health care as well.

I should mention, for disclosure, that one of the conference sponsors was Greater Boston Interfaith Organization, of which I’m a member.

First stop: should we think of patients as consumers?

One sign of the lively discussion at the Empowering Healthcare Consumers conference was a turn to challenging the whole notion of a patient as a consumer.

On the good side: consumers have choices (which means we have to give patients choices—more on that soon). Consumers drive providers to evolve and provide more of what the consumers want. Consumers go for the best deal and promote competition.

On the bad side: consumers need money. This means that people without high incomes can’t make the choices and get the care. And how many sick people have high incomes, or have relatives who can take enough time away from caring for them to have high incomes?

Consumers also stand alone; they act as individuals rather than members of a community. But health is a community issue (think of people influencing each other to eat or smoke, and of environmental health issues such as chemical poisening and asthma). Dr. Eugene Lindsey, President and CEO of Atrius Health, said it would take a long time to move from the I-focus of consumer empowerment to the we-focus of community.

Luckily, the emergence of social media might break through the isolation of consumers. But then we face another problem: consumers of health care don’t always know what to consider when they rate doctors for quality. A doctor may have a great bed-side manner but forget to order a critical test. A patient may come out of surgery feeling relieved and rate the hospital highly, then relapse a few months later because the staff didn’t follow up well.

A consumer has other weaknesses: she often views events in isolation rather than as part of a lifelong process (which health must be), and looks only at the most visible outcomes instead of underlying system dynamics.

Thus, many of us are afraid that treating the patient as a consumer will exacerbate class differences, with the best treatment going to those with money, education, and a sense of confidence built by social reinforcement.

The ideal held in mind by reformers—the ideal of patients carefully comparing doctors on price and quality measures and asking tough questions—also runs up against numerous psychological realities: we are afraid to challenge authority figures who potentially hold our lives in their hands, feel gratitude toward them for the care they’ve already given in making diagnoses, feel risk-averse when our bodies or family members’ bodies lie on the line, and lack the energy to do research in a tense situation where we may feel sick and perhaps feel an intense urgency to choose a course of action.

Hurdle: patients aren’t given information

A true consumer knows how much he’s paying and where he could use the money if he rejected the product currently on offer. Health care is nowhere near providing such transparency. Costs are notoriously obscure; they’re like reserving an airplane flight, except even airlines don’t submit a dozen different bills from people you’ve never heard of, or make you choose a deductible and a cap years in advance of flying. And even when doctors present alternatives to patients (include the alternative of "wait and see"), few patients can grasp the consequences.

Quality is also unmeasurable, despite recent efforts by governments and insurance companies to release certain important data sets such as deaths and readmissions in hospitals. These are invaluable for hospital efforts at quality improvement and accountability, but are too hard to connect to an individual event or treatment to be of much use to patients.

Lynn Nicholas, President and CEO of the Massachusetts Hospital Association, boasted of the association’s reports on quality, which they started in 2005 and now offers 37 quality and patient safety measures. She admitted, however, that it’s aimed more at hospitals than patients because it’s hard to compare hospitals. They are working on making it more consumer-friendly.

Hurdle: the problem is not in the procedure but in the system

But to me, one of the highpoints of the day was Nicholas’s response to a patient advocate who had laid out some of the horrors low-income patients have to go through trying to determine their out-of-pocket liabilities. Nicholas responded that this was a symptom of a dysfunctional system and that we must totally abandon the fee-for-service approach (which of course, hospitals have been exploiting for years) toward "soup to nuts" coverage for the whole patient. This goal—not just finding a hospital where a knee surgery is two thousand dollars cheaper—is the true goal of consumer empowerment as well.

Along those lines, Nicholas also said that evaluating a doctor’s or hospital’s performance on a single procedure or event was ultimately fruitless. The success of an intervention is a long-term process. We can measure and make judgements on quality measures collected by hospitals, such as falls, but not so easily on outcomes.

The idea of evaluating a system rather than an individual procedure is intellectually satisfying, but Martha Bebinger, the WBUR reporter who chaired the day’s panel, pointed out that when we shop for cars or TVs we are not comparing systems. The transition would be a hard one for health consumers to make. At the same time, physicians are offended at being compared like toasters in Consumer Reports.

Advances in self-care

Technology can help reach the vision that we all have for better health care, if the technology is developed from the angle of making people live better rather than just providing more expensive tests and procedures to fix people up when they stumble. For instance, the Quantified Self movement is still mostly a playground for slightly obsessive folks who already to all the right things to take care of their bodies and mental states. But new devices and apps that can turn cell phones into data collectors may change that.

Gradually, doctors will advise their patients to monitor themselves and use devices in the home (or even in their heads) for positive feedback that improves behavior. Such devices will have to be idiot-proof, and the suggestions they give extremely easy to work into a patient’s lifestyle. The devices can educate the patient as time goes by to understand what is being monitored and how valuable it is to health. One form of education must be done up front, though: the provider must help each patient decide how much data he or she is comfortable sharing in order to provide the input to the decision machines that, in turn, will help researchers discover new cures.

What we can learn

Ultimately, all the hurdles we run up against in trying to empower the consumer—cloudy quality measures, difficulties comparing providers, a lack of feedback that can drive behavior change—come down to missing data. If we can collect the right kinds of data, feed them into systems that process it intelligently, and return it to the doctor and the patient in a form they can understand, we can transform health care.

Health care costs have moderated a bit in Massachusetts and across the nation, but the slowdown has been attributed more to the poor economy than to health care reform. According to Barbara Anthony, undersecretary of the Office of Consumer Affairs and Business Regulation, surveys suggest that consumers in the state are feeling the pinch of health costs more this year than before.

The government plans to hold more forums like this one around the state. I bet a forum in a depressed area such as Fall River or Springfield will draw different attendees and impressions from the one we had today, which was dominated by people who either work in the health professions or deal with it in some capacity as lobbyists and patient advocates. (Yes, I had a health care lobbyist right at my table.) And I don’t know how many ordinary citizens are going to take a morning off from work to discuss health care costs and consumer empowerment in health care. But in that, as in so many other issues affecting health care costs, I’m hoping for rapid change.

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