Are We Finally Entering the Golden Age of Healthcare Transparency?

When will patients start reviewing quality data before choosing their doctors and hospitals? The answer has been “soon” for several years, but “soon” may finally be the right answer. If you doubt it, check out the Commonwealth Fund’s new site, “Why Not The Best?

The central premise of the healthcare transparency movement has been that putting data on the Web (quality, safety, satisfaction, even cost) will change consumer behavior, the way such data does for autos and restaurants. The movement, which began in earnest with the launch of the HospitalCompare website by Medicare in 2003, lives by the following catechism:

  1. Let’s post some, even rudimentary, quality data on the Web
  2. Patients will look at the data, and demand improvement of their existing providers or choose better ones
  3. This consumerism will create “skin in the game” around performance data
  4. Hospitals and providers, now motivated to improve, will do what it takes to get better.

Shockingly, in the past five years, these mantras have proven to be way off the mark. Instead,

  1. Some rudimentary quality data has been placed on the Web
  2. Few people are looking at these data, and virtually no real patients are making their healthcare purchasing decisions based on them.
  3. And yet… hospitals are doing organizational cartwheels trying to improve their performance on the publicly reported indicators.

Although #2 is surprising, #3 is truly flabbergasting — it demonstrates the power of shame and embarrassment as motivating forces. Remember last year’s NEJM study by Lindenauer, which found that pay-for-performance worked only slightly better than public reporting? I interpreted this as a negative study for P4P, because if transparency worked this well without any evidence of consumer-induced market pressures, just imagine how well it will work when real people are paying attention to the data.

This month, the Center for Studying Health System Change released another survey that showed that virtually nobody’s aunt is looking up quality data on the Web before choosing doctors and hospitals. The survey found that most patients continue to make their choices based on physician referrals or good old word-of-mouth. In the survey, only 11 percent of people said they used the Web when choosing a new PCP, 7 percent when choosing a specialist, and 3 percent when choosing a facility for a procedure. And, as the authors point out, these figures probably overstate the percent who actually look up quality data, since they refer to any use of the Web, including seeing whether the doctor “looks nice” on Google Images.

What will it take to get people to scrutinize healthcare quality data the way they do data on cars and appliances? Time, undoubtedly, as consumers need to become aware that quality and satisfaction data are out there and familiar with the key concepts. But the presentation of the information will also have to get better. Many of the existing websites, including Medicare’s HospitalCompare, remain aesthetically challenged, mired in the “hey, isn’t AOL cool” era. A population accustomed to watching John King at the CNN Magic Wall wants bells and whistles with its facts and figures.

This month, the Commonwealth Fund, which has become an essential resource in the quality and safety fields, launched a new website, “Why Not the Best?” (www.whynotthebest.org). [Truth in advertising break: I consulted a bit on the site’s development, without compensation.] Do spend a few minutes playing around with the site. Although primarily designed for healthcare professionals and organizations (witness the stories from innovators and the improvement tools), the site is the first I’ve seen that marries healthcare transparency with modern web capabilities. For example, I was able to track my own hospital’s performance over time on a very slick dynamic graph. I quickly located other hospitals in my region by clicking on them on a Google Map, and easily pulled up each one’s quality data. Without breaking a sweat, I was able to compare my hospital’s performance to the best performers in California, or the best in the nation, or the best teaching hospitals, and much more. It is very cool.

The explanation for the failure of healthcare quality websites to catch on clearly isn’t that patients aren’t on the Web, or that they don’t want to use the Web to get information about their health. As described recently in the NY Times, many patients are already using “Dr. Google” to research their diseases and symptoms. And disease-specific social networking sites like patientslikeme are booming. This makes consumers’ apparent lack of interest in quality data all-the-more surprising.

The bottom line is that we will soon learn if consumers’ low uptake of healthcare quality information is due to technical and aesthetic limitations of the websites or something more fundamental. If it is the former, expect that use will skyrocket as more sites – with data presented in more pleasing ways using today’s remarkable web capabilities  – roll out. (Oh yeah, having the quality data become more accurate and meaningful will also be a big help.)  

Although the dynamics of healthcare are famously different than those of other industries, once the lion of consumer choice begins to roar, watch out! It could be the game-changer everyone’s been waiting for.

8 Responses to “Are We Finally Entering the Golden Age of Healthcare Transparency?”

  1. Annie December 28, 2008 at 1:53 pm #

    Decision making is at once both complex and simple. You provided two key clues in the examples listed above where patients voluntarily and enthusiastically access the web and participate in health care decisions. In both examples, the participation comes from the personalization of the interactiveness. In other words, the more the sites approximate key characteristics of therapeutic patient relationships, the broader and deeper the participation.

    We keep forgetting that the patient and consumer roles are not identical, although they do have some overlap. Consumers are taught to look for value (quality, location, prestige, branding, convenience, safety) and cost. The new quality databases do address some of these, although specific cost comparisons aren’t available, and so I don’t personally see much utility in even addressing costs since individuals vary, and institutions have so many formulas for billing. But I digress.

    Patients, by virtue of the role, come with dependencies – of self-care, health awareness, inabilities to carry out required social roles (worker, income earner, family member, student, etc.) and so have attendant anxiety about finances, family life, social roles, body image, as well as perceived suffering from pain, disfigurement, body function alteration, role impingement and death.

    They want information which specifically addresses their perceived needs, desires and fears. They seek information that reassures, comforts and is concrete.

    They aren’t necessarily in a position to dispassionately research, compare and choose a care setting and physician. They are in the patient role and not the consumer role.

    Guided choice, just as in the therapeutic patient relationship, is how the best decisions will be made. But that requires a functioning therapeutic relationship, which more and more patients do not enjoy. It requires an existing relationship with a physician or nurse who knows the patient beyond a database assessment and clinical findings tool. It requires personal interaction.

    This conflation of roles – the consumer with the patient – underlies my objection to patient care institutions and big pharma marketing to patients. Those scarce funds could be better used for patient education, health management and primary care provider support to allow for patients to meet with their primary care physicians and nurses individually and in small groups to learn about and manage their nutrition/fitness/exercise, their preventive care. and their chronic health problems.

    If we kept plugging along with the four P’s: personal, primary, preventive, and public (health), we could increase the quality of the therapeutic relationship (which no one seems to be studying, interestingly), increase primary care physician and nurse satisfaction, focus on helping patients manage their own health problems more effectively and aim for reducing high technology/high cost/high risk services and procedures, where the highest inefficiencies of quality, cost and outcomes are found.

  2. Evan Falchuk December 29, 2008 at 4:01 pm #

    I think the behavior of patients and hospitals is completely rational if you consider the data being presented.

    The trouble isn’t that it’s rudimentary — it is. Or that it isn’t presented well — it’s not. It’s that it does not help patients with the real-life decisions they struggle to make.

    The real struggles of patients are around questions, like do I need chemotherapy or radiation or some other treatment entirely for my cancer? Or was I able to spend a few minutes with the specialist I waited to see and now have so many new follow up questions. You can’t really help with these problems with data, and so it’s not surprising that patients don’t rely on them.

    From a hospital perspective, putting out reams of data slipstreams right into SOP for accreditations and all kinds of other activities they are used to doing.

    Measuring quality is terribly difficult, and I applaud all of these well-intentioned efforts. But I believe the symptoms you have correctly observed suggest we may be addressing the wrong problem by focusing on reporting of the kind of data currently in fashion.

  3. menoalittle December 30, 2008 at 7:22 am #

    Bob,

    Interesting report and thoughtful comments. The data suggest that hospital administrators ought put patients before profits and cease working on the facade of medical care. Just do the right thing and show the patients that someone in the hospital advocates for them. The data also suggest that patients know that the ratings are gamed by clever and manipulative hospital managers whose efforts would be better applied to improving patient comforts…like by hiring a few extra nurses to administer medications in a timely manner and aides to answer call lights in a timely manner…or do said managers think that advertising their hospital’s investment in HIT will attract patients?

    Does any one really think that the rating of being “the best” reflect “the real best” or rather, “the made up real best” (see —- hospital system “urging doctors to vote to bolster ranking Friday, October 13, 2006 By Christopher Snowbeck, Pittsburgh Post-Gazette. Politicians aren’t the only ones orchestrating get-out-the-vote campaigns this fall.”)? What is the best?

    Best regards,

    Menoalittle

  4. AMedici December 31, 2008 at 8:43 am #

    Here are 2 reasons why patients may not investigate hospitals:
    Many (most?) hospital visits are done on an emergency or urgent basis. And many insurance policies dictate which hospitals are covered in their plan.

  5. blackwhitereadallover December 31, 2008 at 7:27 pm #

    I don’t think you can discount rural factors, such as having few hospitals to choose from in the first place. If, like here, that number is two, quality and safety data from a Web site is not going to significantly impact choice.

    I believe components that many health-care professionals may rarely consider are going to matter to the rural patient and his or her family: How far is the drive there? Is parking plentiful? Is there overnight accommodation for families, or at least a clean motel nearby? Is the cafeteria food acceptable to my family, after they’ve driven 40 miles “into town” to visit? Where does my doctor want me to go? Which financial office is most friendly to work with? What hospital will let me stay in the room until my neighbor gets off work and can fetch me? Which has rooms large enough to seat my visitors?

    When choice is so limited, and absent any glaring safety and quality problems, these variables become perhaps equally important.

  6. jfsucher January 1, 2009 at 7:53 pm #

    Great comments above. So I hope to add to them with my own spin on this out of control process that keeps gaining more and more speed.

    1. I aggree with the consumer/patient issue. These two are infact different the majority of time. The “Consumer” of this data was meant for insurance companies and groups like LeapFrog. The reams of data that is presented is nearly meaningless to the patient. Bastardizing this data into patient websites in an effort to help patients choose where they get their care is follie.

    Take for example data points like “hair removed by clippers prior to surgery” (from SCIP dataset) is presented. How does that help a patient choose where they have their laparoscopic operation? To use your automotive industry analogy; It would be akin to presenting to the car buyer that the plastic seat protective covers were removed by hand versus by robot. Would that help you pick out which car to buy?

    2. “Rudimentary quality data”. I have heard this argument over-and-over. That is, poor data is better than no data. BULL. In war, one way to defeat your enemy is to engage in “psy-ops” by delivering MISINFORMATION. This so-called data is suspect at best for a number of reasons. First, the data is collected by the people who it directly affects (the hospitals themselves). It is very is to NOT have any VAPs or CRBSIs when you don’t really look for them. Second, the way the collection of data occurs is horrible. Much of it is not from clinical databases (which hardly exist), but from medicare, billing and HIS databases (which our abysmal in their representation of what truly is occurring). Have you looked at data that comes from the hospital DRG’s? You will be appalled by this so-called information. But this is what we are basing our judgements on. Shame shame.

    3. DATA does not equate with INFORMATION. We are being burdened as healthcare providers with both being asked to collect more DATA as well as being asked to interpret more DATA. What we need is more INFORMATION. This is only going to get worse. We are being negatively affected by this trend for even more data. Lets get this straight. The problem is that no-one is willing to pay for this burden of inputing valid data into a system that can accurately produce information.

    Don’t get me wrong, its not wasteful to actually measure the practice of medicine in an effort to try to improve the delivery of care (I am an evangelist for computerized clinical decision support) What I am concerned about is that we are not going to fix the problems that we do have in healthcare if we don’t ask the right questions. We won’t ask the right questions if we don’t have valid INFORMATION.

    Finally, if WE don’t have valid INFORMATION, then how can we expect the patients to even attempt to make informed decisions. Bah. Prettier websites with more interactive graphics isn’t the answer.

  7. TRR_MD January 4, 2009 at 3:39 am #

    It feels like the public reporting is in a very early stage and we are all feeling the growing pains. It is not clear to me if there are ways to accelerate the learning curve about quality and outcomes reporting for non-academic hospitals.

    Overall, I am seeing positive phenomenon:
    -hospital leadership is VERY involved in the review of data before it is reported

    -physician leaders are beginning to see cleaner data as a result

    -physician leaders need to become more engaged with this activity

    -avoiding negative front page stories in the local paper is a powerful motivator

    The general public may not be picking up on the hospital public reports, but local media are becoming more savvy. Assuming the media provide reasonable coverage, consumers become more informed as they read stories that provide “interpreted data”. This can translate into better “information”.

    Until we have public reporting on physician quality, I doubt consumers will consider the information actionable.

  8. Dr. Marcinko February 5, 2009 at 11:57 pm #

    With all Due Respect … Are you kidding?

    The Centers for Medicare and Medicaid Services [CMS] does not have to turn over physician-specific Medicare claims data requested by not-for-profit Consumers’ Checkbook under the Freedom of Information Act, the U.S. Circuit Court of Appeals for the District of Columbia ruled in an opinion delivered January 30th.

    According to Gregg Blesch of Modern Healthcare, on 2/2/09, the American Medical Association [AMA] joined the Department of Health and Human Services [DHHS] in appealing a 2007 decision that the data should be subject to disclosure, but the appeals court concluded the physicians’ privacy interest outweighs the consumer group’s assertions that the data would be used in the public interest.

    DHHS, meanwhile, was not concerned so much with privacy as with its own legal conundrum involving a 1979 federal injunction barring the release of Medicare data that identifies individual physicians. A 2008 statement explaining the decision to appeal said the DHHS “recognizes and shares the goals of Consumers’ Checkbook” and was seeking a legal way for the government to share Medicare claims data as part of its own quality initiatives.

    Consumers’ Checkbook/The Center for the Study of Services is an independent, nonprofit consumer organization founded in 1974 with the help of funding from the U.S. Office of Consumer Affairs. Its’ purpose is to provide consumers information to help them get high quality services and products at the best possible prices. The organization is supported entirely by subscription payments and donations from individual consumers who subscribe to its magazines, and by fees for surveys, and information services and books. They do not accept donations from businesses and their publications carry no advertising.

    The home page of the AMA website states the organization is “helping doctors help patients.” Is this really the case; or mere rhetoric? Is it true that less than 25% of the nations MDs are members?

    Consumers’ Checkbook said it would use the data to show the frequency with which physicians performed certain procedures; expose how much Medicare pays physicians who have disciplinary histories or poor evaluations; and determine whether they were fulfilling standards of recommended care. The court found each argument wanting.

    And so, your thoughts are appreciated. Are you proud or ashamed of the AMA in this case?

    Fraternally
    David Edward Marcinko; MBA, CMP™
    http://www.HealthcareFinancials.com
    http://www.HealthcareFinancials.wordpress.com

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