Framing the Issue

• Consumers are learning that all health care providers do not deliver equal value.

• Most consumers do not currently have access to or understand how to evaluate the information they need to make smart health care choices.

• New entrants outside the health care industry are taking the lead in educating consumers about health care.

• Knowledge is power. Consumers are learning that they have options when it comes to health care.

When Harry Greenspun called his doctor’s office on a Thursday to reschedule an appointment booked for the following Monday, a recording informed him that the office was closed and would reopen on Monday.

“They didn’t take messages on their machine, they didn’t take emails, and I couldn’t cancel my appointment,” he says.

A few years ago, Greenspun probably would have accepted the situation as unavoidable. No more. He knows that some provider organizations offer better customer service, and he knows that he has options. “I realized that I can’t work with a practice like that, no matter how much I like my doctor,” he says. “That service issue was the straw that broke the camel’s back.”

Of course, Greenspun, a physician who co-authored the book Reengineering Healthcare, is particularly knowledgeable about the fast-changing provider-consumer dynamic; he is a director in Deloitte’s Center for Health Solutions.

But in his role as patient-consumer, he has plenty of company. More than ever before, American consumers are learning that health care providers are not equal — and that information is power to determine the best from the rest.

To be sure, most consumers do not yet have easy access to the exact information about quality, patient safety, cost, patient experience and other factors they need to make fully informed health care choices. And many of those who do have access have not yet learned how to evaluate information for decision-making.

But with the flood of information becoming available, consumers are going to become educated about health care in the not-so-distant future. “Hospital CEOs need to think about the expectation of their consumers,” Greenspun says. “If they are not going to provide information for them, someone else likely will and they may use that opportunity to steer them somewhere else.”

Consumers will know: What does the doctor really think?

More than 5 million U.S. patients have access to their clinicians’ notes about their interactions, courtesy of OpenNotes, a national initiative supported by the Robert Wood Johnson Foundation. “OpenNotes is a mature market tool,” says John Santa, M.D., medical director for Consumer Reports. “The consumer sees the same thing the doctor sees. The buyer has the same information as the seller.”

Since an OpenNotes pilot in 2010 involving Beth Israel Deaconess Medical Center, Geisinger Health System and Harborview Medical Center, more than a dozen health systems, including the Department of Veterans Affairs, Oregon Health & Science University and University of Texas MD Anderson Cancer Center have joined the OpenNotes movement.

In most cases, all clinician notes are made available to patients; notes related to behavioral health and notes for patients ages 13 to 18 are frequent exceptions.

Bruce McCarthy, M.D., president of the physician division at Columbia St. Mary’s Health System in Milwaukee, became interested in OpenNotes when his mother’s health was declining and he found himself calling her physician — a personal friend — to supplement her typical “he said everything was fine” reports.

In 2013, Columbia St. Mary’s became the first health system in Wisconsin to make clinician notes available to patients. To date, most patients have not taken advantage of the access, McCarthy says. Those who have generally fall into one of three groups: family members who have caregiving responsibility for elderly patients; younger patients who are trying to get a diagnosis for a medical problem; and younger patients who want to be in control of their personal data.

As consumers become more educated about the health care system, they realize that physicians do not always agree on a given situation, evidence-based medicine is not always practiced and that every patient needs to be his or her own health care advocate. “I think in the future, more and more patients will see this as a significant resource for them,” McCarthy says. “There are a lot of patients who will be using that data to research things online so they can become better partners in their care.”

Consumers will know: How do your costs compare?

As their out-of-pocket responsibilities grow, many consumers are trying to check prices before choosing where to obtain elective procedures. But getting comprehensive, comparable and reliable information is difficult in most cases and impossible in many.

The inability or reluctance of health systems to make it easy to shop on price presents a business opportunity for industry outsiders — and they are rushing to grab it. One of the better known is Castlight Health, which draws on historical claims data and details of an individual’s insurance benefits and deductible status to provide estimated cost information.

“It will give the average price by doctor and by facility, and it will tell you what your out-of-pocket is going to be,” says Bruce Arick, vice president of finance and administration at Butler University in Indianapolis. “It is customized to our plan so it knows where you are on your deductible and it can advise you how much a service is going to cost overall and how much it is going to cost you.”

Butler University signed on with Castlight three years ago to encourage its employees to start shopping for health care services. Butler’s self-insured plan covers about 1,500 lives; more than 450 people have registered on the Castlight website and they performed about 1,000 Castlight searches in 2014.

The comparative information is helpful for the minority of Butler’s employees who have chosen a high-deductible, consumer-driven insurance option because they have the greatest out-of-pocket responsibility. The majority of its workers, however, are in PPO plans; they have a relatively small deductible and are responsible for co-pays that do not vary, regardless of which provider they choose.

“Butler is looking to reduce the number of PPO plans we offer, and we are trying to encourage folks to go to consumer-driven,” Arick says. “As you see movement in that direction, you’re going to see the popularity of these types of products and the demand for more transparency increase.”

Meanwhile, — a nonprofit initiative in partnership with public radio stations — makes it easy to compare prices in certain health care markets. That website shows, for example, that the cash price for a lower back MRI without contrast in the San Francisco area ranges from $260 to more than $10,000. “crowdsources” prices by asking consumers to use their medical bills and insurance explanations of benefits to report what they have paid for various services. Major philanthropies are getting behind this concept. In 2014, the John S. and James L. Knight Foundation provided grant funding to get the initiative started in California; this year, the Robert Wood Johnson Foundation is funding the rollout in Philadelphia.

Consumers will know: How does your quality of care stack up?

Consumers in Massachusetts can use the Healthcare Compass website to compare the quality of care delivered by nearly 550 primary care practices in the state. On the same site, they can see how the practices performed on a statewide patient-experience survey and what percentage of their patients would recommend the practice.

“People are accessing these data and using it to make choices,” says Barbra Rabson, CEO of Massachusetts Health Quality Partners, which created and maintains Healthcare Compass. “But not enough people are using it. We are not nearly close enough to that tipping point where everybody uses quality information; that is a long way off.”

That said, the push to provide meaningful comparative data about the quality of health care services is so strong — and the demand for the information is increasing so much — that success seems inevitable.

MHQP, a coalition of physicians, payers, patients and others, is one of 10 similar alliances participating in the Doctor Project, a Robert Wood Johnson Foundation initiative to help consumers access and understand information about the quality of care provided by local physicians.

Like MHQP, the other Doctor Project participants have been working for years to develop user-friendly quality information. So has the federal government through its Hospital Compare and Nursing Home Compare websites and many other initiatives across the country.

The disconnect between the vast troves of quality data and the use of that data by consumers who want to make informed choices is clear. Much of the quality data is not on point with what consumers want to know.

For starters, many of the currently available measures are important and valid for certain purposes, but not for helping consumers make good choices. “We measure [providers’] performance where we can get reliable measurement, and that’s not necessarily what people are looking for in terms of information that can be helpful to them,” Rabson says.

For example, a common quality measure — and one that the Healthcare Compass uses in Massachusetts — is the rate of breast cancer screening, a HEDIS measure developed by the National Committee for Quality Assurance. The fact that it is a reliable measure is not meaningful for a woman who is already taking responsibility to get an annual mammogram.

“We need to move the measurement field toward more outcomes,” Rabson says. “If I have breast cancer, first of all, I want to know will [a provider organization] identify it in the screen? So, is the screening accurate? And then, will I get into treatment that will successfully treat my breast cancer?”

Another disconnect: Consumers are not just interested in statistically valid data; they also want to know what other patients with similar medical circumstances have to say. Fifty reviews on TripAdvisor might not give a statistically valid assessment of a given hotel, but a consumer is likely to feel well-informed by reading through those reviews.

“What we need to do is reconcile the industry’s need for highly reliable information with the public’s desire for pretty much any information that can help them,” Rabson says.

That reconciliation is coming. While the Doctor Project is helping MHQP and the other regional health improvement collaboratives disseminate their reliable information, there are many other commercial entities tackling the challenge in different ways.

“The field is absolutely evolving, but it’s not evolving fast enough within the health care system,” Rabson says. She points to, the website that connects patients who have the same medical condition, and, the for-profit site that shares a variety of information about physicians, hospitals and other provider organizations in a user-friendly way. “Healthgrades gets a million hits a day,” Rabson says. “That is promising to say that people are interested and they do like to use this information.”

Consumers will know: What do your patients say about you?

A recommendation from a friend or family member traditionally has been the most influential information used to choose a physician — in part because so few other sources of information existed. But patients are increasingly aware that they can find online reviews to help them choose.

Any consumer who is considering Caduceus Medical Group with several locations in Orange County, Calif., can spend a few minutes reading online patient reviews and know what to expect: Most patients give five-star ratings and enthusiastic testimonials, but a few people complain about long waits for scheduled appointments.

Those comments don’t come from Yelp or other review services; they come from Caduceus’ own website, which has included patient ratings and reviews for more than four years. “We know they’re going to look elsewhere, so what’s wrong with showing them our [own patient satisfaction survey] responses right there — good, bad or whatever?” says founder and CEO Gregg DeNicola, M.D. “It gives us a little bit of street cred, and patients know that if we are scored low on something, we’re aware of it and we’re going to fix it.”

The company that handles the practice’s online scheduling function invites patients to post a review; DeNicola compares the practice with the popular OpenTable website for restaurant reservations that prompts users to report on their experience.

Outside review services are likely to include only a few reviews for a given health care provider or organization, and unhappy patients are more likely to take the initiative to make an online review. That is why University of Utah Health Care started posting data from its Press Ganey Patient Satisfaction Survey, including de-identified patient comments displayed in their entirety, to its physician profiles.

Do consumers care what other patients have to say? The reviews get more than 60,000 Web views a month.

Consumers will know: What does personalized medicine mean to them?

Although human genome sequencing — currently available for about $1,000 — is still not commonplace, that is about to change, says Michael Christman, president and CEO of the Coriell Institute for Medical Research, an independent, nonprofit biomedical research center. He predicts that within five to 10 years children will have their DNA sequenced at birth.

“The information will simply become part of an enduring set of data from which different specialists and different electronic medical records can draw down the pieces of the genome that are relevant for determining how a drug might work or the risk of a certain disease and use that as part of everyday care,” he says.

Christman forecasts that genome sequencing will not become ubiquitous until the clinical utility of that information is demonstrated. And that day is coming. Oncologists already know the importance of genetic data to determine whether a particular therapy will treat an individual’s cancer successfully, and genome sequencing is fast becoming a standard protocol in making treatment decisions.

Physicians in other specialties have been slower to make use of genetic information, but as they learn how it can improve the care they deliver, they will want it for their patients. And consumers will drive demand. “I think it is already being recognized now that this is a best practice in medicine,” Christman says. “From the point of view of a health care system, this will have a marketing advantage. If your system is not doing genetic testing and other systems are, that puts you at a competitive disadvantage.”

Consumers will know: Is your hospital safe for patients?

Consumers today pay little attention to the concept of patient safety. “Our market research suggests that many consumers think that all hospitals are equally safe,” says Leah Binder, president and CEO of the Leapfrog Group. “They think of hospitals almost the way they would think of a franchise like McDonald’s.”

Since 2012, Leapfrog has been publishing Hospital Safety Score, a website that assigns grades A through F to reflect a hospital’s ability to prevent errors, injuries and infections for more than 2,500 acute care hospitals. The scores are updated twice a year.

“The strategy is to create a market for safety,” Binder says. “We want hospitals that improve their safety record to get rewarded for it — and hospitals that don’t pay attention to their safety to feel the pinch in the market.”

Lola Butcher is a contributing writer to H&HN. 

Executive Corner

Although more consumers are gaining health insurance coverage, they are not insulated from high health care costs. In its “2015 Health Care Providers Outlook: United States,” Deloitte says consumers are experiencing higher out-of-pocket cost-sharing for all types of health care services. Its forecast: The increases will continue as employers shift to high-deductible offerings and more individuals gain coverage through public health insurance exchanges. According to Deloitte:

• Consumers are realigning the health care market by using their increasing purchasing power and access to information to drive health care decisions.

• A hospital’s or health system’s fate depends in part on its place within the health care hierarchy. Centers of Excellence with a narrow focus — specialty hospitals or health systems focusing on children, for example — will proliferate. If community hospitals cannot match their outcomes, consumers will seek treatment elsewhere. Moreover, employers and insurers will encourage them to do so because of the increased value for their spending.


This is the third in H&HN’s five-part series on the rise of the health care consumer. Throughout 2015, we will examine how Americans increasingly are shopping for care similarly to how they shop for other goods and services, and what that trend means for hospitals and other providers. The fourth installment will appear in September.