Healthcare System Transparency and Patient Safety

When a few cautious experiments in the direction of greater health care provider transparency were proposed, some were alarmed. The worry was that so-called "Disclosure, Apology & Offer" (DA&O) practices would lead to increased litigation costs.

In a Perspective post in the NEJM, A. Kachalia discusses the immediate benefits for transparency, but also cites systemic obstacles to broader adoption of the practice.  (Kachalia is likely aware of the issues, guessing from the symbols listed after his name.) Citing the few known DA&O studies, he writes that:

. . . data from two pioneering programs have revealed improved liability outcomes, including a 60% decrease in legal and compensation costs in one program. Proponents of DA&O programs also tout downstream safety benefits from greater transparency. Early program successes have fueled extensive interest and a push for broader implementation, but there has not been immediate widespread adoption, so transparency is far from ubiquitous.

That's the promising news. Less hopeful: a complex mix of obstacles. Many of the impediments would be concerns in any setting, not only health care. They include:

• A real or perceived tendency to single out a single provider's error rather than pursue a systemic solution
• Unclear path to clear communication between providers, patients, family and public reportage
• Even if organizations accept responsibility for "systems-level errors" (and if those can be defined), providers are singled out in reporting to state boards and quality monitoring data bases like the National Practitioner Data Bank. Worse, physicians may worry that, if caught up in systems-level errors, they could be "associated" with compensation to patients.

Kachalia also argues for legal reforms, such as greater use of "enterprise liability" instead of the current method which holds individual practitioners responsible. Another idea would be to have "administrative health courts."

Inference

The practice of medicine will become increasingly a systems-level enterprise. Transparency must become an integral part of those enterprises. The legal framework in which failures occur should take into account systems processes. Transparency should be fully integrated into the workflow -- both human and automated -- inside those enterprises, and nurtured by professional standards within health care related disciplines.

According to a 2012 DHS report, most medical errors are not reported, and even when they are, corrective actions are often not taken.

Increased transparency should be part of health reform. As more of the practice of medicine becomes software-assisted, e.g., through clinical decision support and workflow automation, initiatives such as those proposed by Kachalia will become increasingly important. Accountability in health care -- as with quality and cost containment --  must be seen as the corporate, enterprise effort that it has become.

Consumer Health Care Transparency: What's Next

Yesterday's post was about how the new health exchanges brought basic transparency in pricing and features. It could be argued whether these are truly issues of transparency, but today MedCityNews compiled some additional suggestions from observers. Jen Joynt joined [sic] my call for quality data to be integrated with pricing and coverage details. Maribeth Shannon, director of Market and Policy Monitor program at California HealthCare Foundation, says the next big thing should be for consumers to sign off at the "point of sale" on the estimated full cost of major incidents, such as surgery. This step should include an acceptance of probable outcomes and cost tradeoffs, decisions which are too often left to physicians, she says. Pokitdoc's Lisa Maki says the portals should allow consumers to shop for lenders who will help them pay for non-covered expenses. Amy Edgar at Cedar Crest College asks why prevention assistance isn't part of the game. [via @medcitynews]

Health Exchanges: Do They Pass the Transparency Test?

After a rocky start, the Affordable Care Act is at the beginning stages of "going online." Now that the health exchanges are online and seeing steady traffic, perhaps it is time to revisit a claim made by advocates that the exchanges promote transparency. One stated goal for the federal Health Insurance Marketplace is to ". . . bring new transparency to the health insurance market so that Americans will be able to compare plans based on price, quality, benefits and other important features."

Transparency for Shopping Based on what is provided at the New York health exchange, for example, there is indeed transparency of price and offering. Consumers accustomed to seeing this feature regularly at Amazon.com might consider product comparisons humdrum, but such direct apples-to-apples comparisons of health insurance plans were previously difficult, tedious and error-prone. A uniform basis for comparison is now available to consumers. 

First-time visitors to an insurance provider web site may not be aware of what is perhaps an exchange's most important feature: a clear list of providers not hosted by a third party with a financial stake in one of the insurers --such as broker-provided lists. Plus, standardized quotations that include annual anticipated costs to consumers -- copays, deductibles, etc. -- are now available, showing healthy, younger insureds as well as an older person being treated for diabetes. 

What about quality? That said, the exchanges do not make it easy to integrate quality data into these comparisons. While health care organization (e.g., hospitals) and physician quality is available from other sources, this still requires collecting available data from multiple sources. Consumers might even be willing to pay more for quality, but only if it can be provided with comparisons of like offerings, time frame and type of quality assessment. 

Bring on the data A gradual move toward transparency was also signaled by an August 2013 call for public comment by the Center for Medicare and Medicaid Services (CMS). Some data already released by CMS is being used for analytics, but the agency is also considering the release of physician reimbursement data. The call for public comment invited opinions on possible physician privacy aspects of the release, and whether such releases should be only in the aggregate, or at the individual physician level. In the call, CMS cited transparency as one of the objectives which it believes could help improve Medicare quality and reduce potential abuse.

CMS data has some distance to go before the data it has provided to health care analysts is readily digestible by citizens. The Sunlight Foundation lists a sampling if what is already possible using CMS data. But it appears that the agency may recognize some of the ground yet to be covered. 

Cautious Moves Toward Data Transparency by Big Pharma

PhRMA Data Sharing Proposal

A longtime goal of some researchers has been to obtain public access to clinical trial data for approved drugs and medical devices. Access by competent investigators was requested first, but patient groups have also sought access to such data.

The key offering is to disclose

. . . patient-level clinical trial data, study-level clinical trial data,and protocols from clinical trials in patients for medicines and indications approved in the United States (US) and the European Union (EU) as necessary for conducting legitimate research.

The proposal also recommends that:

• negative as well as positive findings should be published 
• external reviewers as well as each company's review process will be publicly disclosed 

Greater transparency for clinical trial data may be forthcoming if such an industry plan gains traction. It will take more than just providing an email address and getting a password. The proposal would require that companies set up "outside panels." and such panels would review data sharing requests from “qualified” researchers. Data recipients would also have to explain how the data was to be used.

Skeptical advocates such as Ben Goldacre of AllTrials.com, quoted by The Scientist, said  “the industry commitments suggested here are weak and filled with loopholes. . . They fall way short of the concrete commitments the European Medicines Agency has already made about sharing trial information, and also fall short of recent commitments from GSK and Roche.”

Some theorize that this effort is mainly to ward off European Union regulators, as reported by New York Times writer Katie Thomas. The announcement was made by the Pharmaceutical Research and Manufacturers of America (PhRMA) and the European Federation of Pharmaceutical Industries and Associations. The original sharing proposal text is available at their web site.

KNOWLENGR Knowledge Engineering Analysis 

From the manufacturers' perspective, there are some serious concerns. Apart from the patient privacy concerns, risk of frivolous requests and competitive issues, it is a new information technology initiative that will require sophistication and protocols -- especially if indirect consumer access is anticipated. Because standards for interoperable data sharing across publishers is still evolving, compliance with the proposal will entail more than posting up a public Google spreadsheet. As work at the Elsevier Innovation Explorer community has shown, there are various stakeholders with different perspectives on what constitutes data quality, transparency and usability. For instance, how can there be a data warehouse of information across manufacturers if there is no agreement that could represent a de facto master data management plan?

Gartner defines MDM as “a technology-enabled discipline in which business and IT work together to ensure the uniformity, accuracy, stewardship, semantic consistency and accountability of the enterprise’s official shared master data assets.”

It will be awhile before "transparency" can be added to this definition for public clinical trial data warehouses.

Are you sure about that, Dr? Health care Transparency and SocNet Pervasiveness

A 2009 incident reported by an IT blogger ("How I tweeted my way out of spinal surgery") involved a woman who suffered a spinal injury while in rural Pennsylvania. According to patient and IT specialist Sarah Cortez, the rural hospital's staff involved attempted to persuade Ms. Cortez to undergo back surgery -- she believes at least in part because of her appealing top tier health insurance coverage.

ZDNet's Michael Krigsman looked into the facts surrounding the case and cited the patient's assertion that in addition to serving as a revenue enhancer, the case might boost the hospital's accreditation statistics. Ms. Cortez resisted the staff's attempts at what she believed to be intimidation and reached out to Twitter followers to provide names of neurosurgeons in Boston where she lived. She was successful in this attempt while still hospitalized and despite the obvious difficulties in reaching knowledgeable practitioners on short notice.

Krigsman concludes that the incident reflects two emerging trends relevant to enterprise transparency:

1. That "social networking causes a balance of power to shift from the enterprise to its customers. Customers don't care about an organization's internal communication hierarchies. . ." Twitter allows customers to use alternate channels to test or even contest judgments offered by house experts whose authority was previously difficult to question.
2. Krigsman believes transparency is "inevitable" as "ad hoc collaboration groups" and "transient social collaboration" urge enterprises toward more responsive processes.

The motivations for the enterprise may be defensive. Krigsman reminds his readers that "every customer is a potential broadcaster reporter."

The implications for the professions -- physicians, attorneys, and accountants take note -- are unmistakable. Whatever the privacy, public policy, professional practice and public ignorance considerations that may cloud any given decision, be prepared for some patients to question, "Are you sure about that, Doctor?"

For a more nuanced view of web enabled health content, its publishers and information consumers, research such as this study by J. Segal may demonstrate some intrinsic limits on transparency. Some limits may be imposed by weaknesses in communications that underlie such attempts.

Consumer Reports Calls for Transparency in Health Insurance

Consumer Reports' story "Hazardous Health Plans" (May 2009) revealed the effects of what must be called deceptive health insurance plan descriptions. Coverage gaps big enough to drive truck through (my insensitive wording) caused CR to term such plans "junk insurance." Perhaps surprisingly, some of these junk plans are still offered by major firms such as Aetna ("Affordable Health Choices"). After reciting several harrowing stories, CR offers its own list of recommendations for lawmakers. It comes as no surprise to the Wonk that one recommendation calls for enhanced policy transparency. In some states, consumers are not able to examine the details of policies they purchase until after they have joined. If they change their minds after seeing the details, CR observes, consumers run the risk of going without coverage.