Archive for Transparency/Public Disclosure
by Fred Fortin
May 16, 2008 at 8:50 pm · Filed under Policy Makers, Regulators, Health IT, Transparency/Public Disclosure, Ethics
Lawrence Lessig wrote in Free Culture, that “privacy was assured because of the inefficient architecture for gathering data and hence a market constraint (cost) on anyone who wanted that data.” Privacy was guaranteed to us by a kind of economic “friction” and system inertia. Today that friction has all but disappeared and the privacy protection it once offered along with it.
Given that health care is a late bloomer to new media and the Web 2.0, some of the friction Lessig talks about may still be helping to secure private health information. Since this confidential information predominately resides today in slow moving, conservative institutions that dominate health care delivery, there is still time to consider the threats to privacy that Jonathan Zittrain outlines in his new book, The Future of the Internet (and how to stop it). He writes:
Cheap sensors generatively wired to cheap networks with cheap processors are transforming the nature of privacy. . .
The heart of the next-generation privacy problem arises from the similar but uncoordinated actions of individuals that can be combined in new ways thanks to the generative Net. Indeed, the Net enables individuals to compromise privacy more thoroughly than the government and commercial institutions traditionally targeted for scrutiny and regulation. . .
The essence of Privacy 2.0 is that government or corporations or other intermediaries need not be the source of the surveillance. Peer-to-peer technologies can eliminate points of control and gatekeeping from the transfer of personal data and information just as they can for movies and music. . .
Peer-leveraging technologies are overstepping the boundaries that laws and norms have defined as public and private, even as they are also facilitating beneficial innovation. . .
The slippery slope that privacy now sits upon is coming to health care.
Most of the privacy debate we see now in health care is focused on what Zittrain would call Privacy 1.0: how to impose rules and sanctions regarding things like disclosure, notice, encryption etc. upon recognized institutions and professional groups and medical workers. And while we hear calls for a new national privacy framework that will apply to the information technology industry (Google, Microsoft) it centers on the protection and control of electronic or personal health records. Again the emphasis is on formal records and institutions.
Privacy 1.0 is still a necessary front to secure if we are to modernize the health care system. But it does not get at the threats to privacy that Zittrain contemplates.The recently touted Congressional bill S 1693, the “Wired for Quality Health Care Act’ may, if passed, provide various forums for discussion of Privacy 2.0, but the bill itself seems oblivious to the implications of these kinds of issues.
So how do we manage ‘consent’ when it comes to private health information in this social media environment? This is one hell of a key question that needs to be addressed, and one that many are afraid to ask less it result in some draconian measures applied to all social media.
Do we have to accept a diminished private space to gain the benefits of social media? Will confidential health information become the entertainment for the ‘monitorial citizen’, part of the banal collective din of spectators who are fast becoming the new surveillance force in contemporary society? The values that are “animating our concern for privacy” are changing according to Zittrain, noting the age gap between those who use social media and those who shun it.
Zittrain does pose some ideas at least on how to signal the ‘intent’ of patients when it comes to their health information through tags, and embedded codes. But they pale in comparison to the zero-tolerance controls now demanded by US laws and regulations.
Nicholas Carr argues in The Big Switch, that contrary to popular sentiment, the technologies that make up the Internet are not those of emancipation, but are at core “technologies of control.” As social media begins to invade health care we will be able to test the capability and nature of that control. So hang on.
by JMoore
April 23, 2008 at 2:51 pm · Filed under Policy Makers, Consumer Engagement, Health IT, Transparency/Public Disclosure, Value-based health care
WHCC 2008 just wrapped up with a final keynote from Secretary Leavitt. Leavitt’s keynote was a progress report on the four cornerstones that have driven HHS under his leadership.
Cornerstone One: Standard Quality Measures
There has been a lot of quality metrics established, but agreement on the standards by which these will be measured is still a big challenge. Leavitt believes we are moving too slow. Currently, HHS is doing an inventory of the quality measurements they are currently using throughout HHS. They have identified 100 of them and will be going public with these measures this year.
Cornerstone Two: Standards for Cost of Care
Leavitt came down hard on healthcare costs and billing structure stating:
Our billing system in healthcare is insane.
He went on to draw an analogy between a consumer buying a car and a consumer buying knee replacement surgery going on to say we need to challenge the assumption that buying healthcare services is any different from other industries. Leavitt believes that current efforts striving for the perfect solution will never move us forward - he again stated we are moving to slow. We need to strive for good, not perfection. CMS is currently aggregating its cost for common procedures data and will make that publicly available to push the cost transparency issue forward. Getting back to that knee/car analogy, CMS covered the costs for 250.000 knee surgeries in 2007, the costs for those procedures will be made public this year.
Cornerstone Three: Interoperable EMR
Sees HHS steadily marching forward on interoperability. Quite proud of the establishment of CCHIT and the certification process used to insure EMR software is in compliance to interoperability standards. HHS, via it National Health Information Network (NHIN), will test flow of data among several systems by end of this year. Next year, he foresees this moving beyond test data to the flow of real data and scale-up.
While Leavitt recognizes the challenge of a broader NHIN and interoperability with fewer than 10% of small practices having an EMR system, he gave little concrete guidance on how to overcome this issue. They are looking to change the economic equation to promote adoption. What that equation will be remains to be seen, but I’d look to CMS as the prime leverage point.
One of his chief objectives this year is to see further adoption of eRx practices, which he will promote strongly. Currently looking to attach eRx requirements with physician reimbursement payment rule of he CMS bill before Congress.
Cornerstone Four: Incentives to Seek Value
He saved the fuzziest statements for this last cornerstone. Again, Leavitt promoted the need to establish standards for value metrics and incentives. Also emphasized the need for trust among all stakeholders to get this to work. The biggest challenge that HHS has uncovered here is that value and incentives are driven locally. Therefore, HHS’s role will be to establish the standards, and let the local community drive incentives. Chartered Value Exchanges, of which 14 have been awarded/funded to date, will be the mechanism to drive value and incentives at the local level. Goal is to have 50 opertational by 2010.
Leavitt closed his presentation by stating he sees the unbridled rise in healthcare costs as the biggest threat to our nation’s national economic security. Solving the healthcare puzzle is this generation’s challenge.
Analysis:
Yes, movement on Cornerstones One and Two has been glacial. Too many vested interests have very strong financial reasons to stall any progress on cost and quality transparency. While it appears that HHS will look to further leverage the clout of CMS, seems too little too late, unless of course the next administration picks up where Leavitt left off and pushes even harder to make this happen. In full agreement with Leavitt that we should strive for good enough and not perfection. Advocates for perfection are the ones truly stalling the process.
For Cornerstone Three, do believe that for all the complaining I have heard, all-in-all, CCHIT is moving the interoperability ball forward and EMR companies are structuring their solutions to comply. Now we just need to educate the physician. Here, HHS has fallen far short of the mark. For all the talk about wanting to drive adoption among physicians, adoption is still horribly low. Coupled with strong incentives to encourage adoption (CMS payment structure?) HHS could do more in educating physicians on what’s in it for them. The EMR market is still surprisingly fragmented, and even for me, an HIT analyst who covers this market for a living has a difficult time keeping up with all of them. Maybe CCHIT can provide some guidance here as well.
Corenerstone Four is my least favorite and was where Leavitt made the least clear statements. Defining value and structuring incentives around value is an extremely hard thing to do. The Chartered Value Exchange sounds like a re-branding of the failed RHIO concept and I don’t give these new exchanges any more chance of surviving than its predecessor. Secretary Leavitt, with all due respect, throw this one in the can and go with a three legged stool, afterall, a three legged stool is more stable anyway.
CIGNA & WellPoint to Make PHRs Portable in 2008
You heard it here first folks, CIGNA and WellPoint will make member data portable by end of 2008, following the lead of Aetna and UnitedHealth.
Sat in on the session, Critical Health IT, which had representatives of WellPoint and CIGNA talk about their consumer and broader health IT initiatives. During Q&A got a chance to ask both why have they not come forward with a public statement that they support the portability of a member’s PHR. (Note, during their own prepared remarks they gave somewhat dismal views of PHRs stating adoption has been a challenge). Both stated that they have every intent of making a member’s data portable. WellPoint and CIGNA are currently deploying the CCR standard internally to insure that the data will be portable and enable a member to populate a PHR of their choosing outside of their health plan. They also went on to state that this will be completed in 2008.
Towards the end of our exchange on this question, the WellPoint representative went on to state that they still have issues regarding privacy and releasing such data to a non-covered entity. GIGNA nodded in agreement. What a load of bull, particularly after WellPoint has had a few privacy/security breaches of their own.
Hey WellPoint, its my data, let me choose whether or not I wish to take the risk and stop being so damn paternal. Or is it, you just don’t want anyone between you and me? Watch out, you are about to be dis-intermediated.
And finally, thank you to the WHCC 2008 team for inviting me to attend what has been an excellent event. Your ability to bring together many of the leaders in the healthcare industry is to be commended. I have learned much in these two and a half days, so thanks again for the opportunity to participate.
John Moore is Managing Director of Industry Analyst firm, Chilmark Research
by Fred Fortin
April 22, 2008 at 1:50 pm · Filed under Uncategorized, Policy Makers, Transparency/Public Disclosure, Quality Measurement
The WHCC conference sessions on transparency in healthcare are demonstrating that this movement is way more than a passing fad. As all stakeholders in the healthcare system — private institutions, government agencies, health plans, employers, group practices, research organizations, online service companies — are all getting in the mode of how to open up the black boxes in healthcare to consumers and payers of all stripes.
What’s fascinating is is to witness not just the measures, programs and politics unfold, but also the evolution of the questions that are being asked. Reed V. Tuckson, MD, UnitedHealth Group observes, for example, that the question of what is the best hospital is morphing into the question of what is the best hospital for me and my particular medical condition.
Robin Downey, a Senor Vice President with Aetna argues that once consumers ‘get it’ about the usefulness of healthcare information, they just want more and more. With her health plan, the black box they are opening, is “what is it going to cost me to be a covered by Aetna?” This is not just about co-pays, and premiums, but also about what Aetna is paying to their contracted doctors and hospitals. So they are starting to disclose Aetna’s actual negotiated rates with their provider network. And people are surprised wondering if they are giving away their bread and butter, that is, proprietary information that they have spent considerable money to develop.
The bar for transparency is rising, and the market place is responding. Hang on.
by Fred Fortin
January 1, 2008 at 8:21 pm · Filed under Policy Makers, Regulators, Transparency/Public Disclosure, International Health, Ethics
Health care privacy is part of the bigger picture of a society’s respect for human rights and individual persons. Balancing privacy, security as well as transparency and openness is a cultural and political challenge for any nation. Surveillance is the modern compromise for living in a dangerous world. But how much, who, where and when are choices and decision-points by authorities that affect us all. And consequently, the way we manage the tensions between privacy and legitimate surveillance generally, will impact the way we think about the privacy of medical information.
Privacy International has come out with their international privacy rankings and determinations of the world’ leading surveillance societies. The 2007 rankings indicate “an overall worsening of privacy protection across the world, reflecting an increase in surveillance and a declining performance of privacy safeguards.” One category the report is the surveillance of “medical and financial movement” in which countries like the U.S. and the U.K. (and others) are deemed countries with the worst records providing “weak protections of financial and medical privacy.”
A few weeks ago I attended the World Healthcare Innovation and Technology Conference (WHIT 3.0) where a different perspective was being advocated, namely that health care privacy laws were too strict and impeding progress in the implementation of information technologies and new media that’s needed to improve quality, access and constrain cost. Figures such as Adam Bosworth were unequivocal: Government is “trading off the deaths of hundreds of thousands of people to prevent the exposure of very few” with these laws against “possible and rare risks to privacy.” In that conference, no one contested his position. I could imagine a very different conference, say of privacy or health care activists, who would find Bosworth’s position an extreme one indeed.
I once visited a thriving hospital in Beijing where patients were lined up outside just to get services. Once inside the hospital physician’s office, they sat across the desk from the doctor along with the next few patients in the waiting line, who watched and even participated in an open door, open seating and open discussion of the patient’s problems. Certainly a surprise to westerners, but it is a normal practice at many of China’s public hospitals.
The point is, the struggle to find balance in this area is going to run up against a strong phalanx of opinion and cultural differences no matter where one sits. And it is by no means clear or self-evident, despite all manner of strong assertions to the contrary, where that balance point resides.
by Fred Fortin
December 23, 2007 at 8:56 pm · Filed under Policy Makers, Consumer Engagement, Transparency/Public Disclosure, Hospital Administration, International Health, Ethics
From a China Digital Times post translated from the China News Service:
China’s Ministry of Health and Chinese Medicine Administration have jointly issued a regulation that aims to set up a evaluation system to tally the medical ethics of doctors in various hospitals and other health care providers in the country. There are three components in the evaluation regime: self-assessment, departmental assessment and institutional assessment. A filing system will also be set up to store the records, in an effort to link the ethics scores with the doctor’s compensations and promotions. But there is one thing missing, as some commentaries point out: opinions from the patients and their families.
If I were a physician in China, this new initiative would make me extremely uncomfortable for a couple reasons. First, physicians working in a health care system characterized typically by a heavy top-down management style, and absent a strong peer advocacy group, are at a distinct disadvantage when it comes to disagreements about professional behavior. And second, political intolerance of dissent and social action is often framed as action against ethical misconduct. I do recognize that medical leaders and institutions do have responsibilities when it comes to the ethical behavior of those whom they oversee. But it is the cultural and political context that surrounds this new ranking approach that makes me uncomfortable.
As far as the absence of the public ranking of physicians in this new scheme, that, my friends, is simply a matter of time.
by Fred Fortin
November 9, 2007 at 1:57 am · Filed under Uncategorized, Policy Makers, Regulators, Transparency/Public Disclosure, Electronic Medical Records
Fred Trotter wants to talk to you about Microsoft’s new Health Vault (MHV).
He hopes that by publishing his concerns that he might be able to draw some attention from the medical community to what the free software community is saying about MHV. “Its something of a blind date,” he says “but I strongly believe the two of them should definitely meet!”
Specifically, Trotter wants to examine the implications of a proprietary software personal health record (PHR) on software freedom and his concerns about the ownership, privacy and security of the medical information put in it. He writes,
“The ideals of software freedom are that users should have control of software, rather than companies controlling users through software. It may seem like a trivial point to my geek readers, but without control of software it is not possible to have control of data.”
His arguments span a number of issues:
- MHV fails in its commitment to maintaining the longevity of medical information across future generations (the seven generations test, he calls it), a commitment that is vitally necessary to understanding of DNA and its relevance to medical conditions over time, for example;
- A private, for-profit, corporation is an inappropriate storehouse for records that future generations will need;
- Microsoft has a long history of standards abuse and “famous” for incorrectly implementing standards and creating new incompatible “dialects”;
- Portions of medical records operate under different disclosure rules based on whether they reveal a persons HIV status, for example. How can this kind of complexity be managed he asks?
“Medical records belong to the patient, except when they don’t. They should be accessible to the patient except when they shouldn’t. The records of minors are always open to their guardians except when they are closed. Segmenting data in order to protect portions of health information is currently an intractable problem of free-text analysis. Tagging patient records with critical information is difficult. Trust is far more complex than is first seems. Finally, patients should be allowed to “control” their own record, except when that control would allow them to do something that would invalidate the record.”
And finally, he argues that the publicized attestations as to the privacy and security of health information in MVH have not been really validated. “What matters” according to Trotter, is not what Microsoft, or anyone says, but “what the software actually does and the only way to determine this, one way or another is to read the source code.”
The mistake he argues, is that we, the medical community, are assuming the issues with MHV and PHRs are legal/medical and ethical ones rather than legal/medical/ethical and technical problems.
We may want to take a listen to what he has to say.
by Fred Fortin
October 23, 2007 at 1:29 pm · Filed under Transparency/Public Disclosure, Quality Measurement
I reported previously on a landmark case where a Washington D.C. federal judge ruled in favor of a consumer group that sued the Department of Health and Human Services (DHHS)to allow disclosure of specific data about doctors from the Medicare Claims database.The non-profit Consumers Checkbook filed the suit to allow access to the database so that consumers will be able to find out how many times their physician has performed a procedure that they may be facing. Federal rules now protect the privacy of this physician information.
I asked then whether any action — such as an appeal — would be in contrast to the Administration’s current transparency and value-based initiatives. I also took the opportunity at the time to pose the question to DHHS Secretary, Mike Leavitt on his new blog. No response.
Well it is now reported that DHHS has decided to appeal the ruling. DHHS spokesperson Kevin Schweers said that the department is “fully committed to making available as much Medicare data as allowable by law.” He added, “Unfortunately, in the case at hand, two federal courts interpret the law differently, and we’re caught in the middle until that dispute is settled. When that day does come, it’ll be a day too late as far as we’re concerned.”
A cryptic yet understandable response. I hope the public interest in this case stays alive as it travels through the justice system.
by Fred Fortin
October 17, 2007 at 11:52 pm · Filed under Uncategorized, Insurance, Policy Makers, Transparency/Public Disclosure, Pay-for-Performance, Quality Measurement, Value-based health care
The Robert Wood Johnson Foundation has sponsored a series of articles on legal barriers to health information that lays before us the reality of how difficult transparency efforts and moves to promote quality outcomes through financial incentives could become. In an article by Rosenbaum, Kornblet, and Borzi, the authors examine a number of possible allegations that could be brought against health plans that try to use some form of physician tiering based on quality or efficiency measures.
But first the authors issued a cautionary note, that for most of us, would seem obvious, but apparently still needs mentioning. They warn that
“Regardless of the legal theory chosen . . . certain basic attributes in current health plan practices are sure to trigger one or more theories and allegations: (1) secrecy in both the standards used and the weights used to perform rankings; (2) the absence of a transparent rational basis for the methods chosen; and (3) the absence of a process by which physicians can examine the data on which their rankings rest and challenge errors in data or methodology.”
To be honest, I don’t know of a reputable health plan that in this litigious day and age would be so lacking in common sense that they would knowingly go against this advice. If anything, health plans are too highly attuned to the risk of legal challenges. Progress in improving care will more likely be impeded rather than be pursued with the kind of reckless abandon implied here. But it is also my experience that no matter what reasonable precautions you take, lawsuits seem to materialize anyway and are a constant source of concern and expense.
In a nutshell, these are some of the legal strategies, according to the authors, that could be used by providers against health plans:
- Allegations of violation of statutory or common law fair process/due process requirements
- Allegations of violation of federal laws regulating health plans, state insurance laws, and more generalized consumer fraud statutes
- Allegations of violation of defamation and libel common law principles or statutes
- Allegations of violation of federal and state laws applicable to certain categories of sponsored health plans
- Allegations of intentional interference with contract/breach of contract
- Allegations of restraint of trade
- Allegations of violation of civil rights laws
It is beyond this post to go into any further detail about these strategies. But it’s easy to see that there’s a lot of legal ground that has to be covered here before physicians and health plans can become comfortable with each other around these issues, and before this national agenda can get the type of momentum it needs to make meaningful gains in the quality of health care.
by Tony Chen
October 12, 2007 at 10:06 pm · Filed under Health IT, Transparency/Public Disclosure, Electronic Medical Records
Check out this link at The Health Care Blog for a nice powerpoint-build explanation of how health 2.0 could evolve.
Most folks think of health 2.0 simply as “user-generated” healthcare content and intelligence, but as you’ll see in this graphic, it may evolve to so much more than that.
And if you think that health 2.0 is still a long way out, you’ll be interested in the first health 2.0 company IPO, Athena, the largest IPO of 2007. While some investors think it’s overrated, there’s something beautifully simple of an internet-based EMR that aligns incentives with physician practices (by and large, Athena only makes money if their clients are increasing revenue)
by Fred Fortin
October 1, 2007 at 2:07 am · Filed under Policy Makers, Health IT, Transparency/Public Disclosure, Business of Health, Hospital Administration, Electronic Medical Records, Ethics
Last week AT&T Inc. announced it is now selling “a complete portfolio of radio frequency identification (RFID) tracking offers for health care providers. The RFID solution will enhance visibility into the operations of hospitals and other health care facilities.”
“The company is offering the devices, infrastructure and systems needed for full-scale tracking applications — everything from tags and software to networks and data storage”. . .providing “a Wi-Fi-enabled location-based service to track equipment, devices and patients. . .”
In an interview with Tim Cunningham, Director of RFID development at AT&T, specific solutions for their customers would differ since “it all depends what is being tracked, and whether that includes patients or not,” he said. Intel’s Director of Research, Andrew Chien, speaking at the MIT’s Emerging Technologies Conference this week, talked about “terascale computing”. Chien is looking at how to use these future machines.
“One of the things we’re very focused on is this idea of inference and understanding the world. The big idea is all about this question of whether inference and sensors are really the missing piece to make ubiquitous computing come to fruition.”
Ubiquitous Computing (pervasive computing, physical computing, tangible media) or “Everyware”, as critical technology futurist Adam Greenfield describes it, is here. Today. And while the promoters of Health 2.0 feel there is gold in “them thar hills”, but are still looking around for a business model, ‘everyware’ developers are already mining the health care industry’s deep pockets who, in turn, are being driven by a number of more immediate concerns such as patient safety and cost.
So what is ‘everyware’ when it comes to health care? Well, let’s take something we are starting to get a handle on, Electronic Medical Records (EMR). We’ve already mentioned the evolution we see happening towards an intelligent EMR (see earlier post).We now think of the EMR as a snapshot of someone’s medical history and current status. What if the EMR was more of a movie instead: a continuous, real time flow of information from the source, the patient’s body, to an intelligent networked system geared to flag critical indicators and thresholds and whatever else, for that matter, that needs monitoring?
Medical vigilance technologies, for example, hook up the body’s formidable medical information production capabilities to wireless, networked and intelligent systems — whether you’re in the hospital, at home or on the go. Tracking technologies can also tell where you are, or have been, in each of those settings as well.
For hospitals, tracking applications, like that of AT&T, can both save lives and money. Beyond knowing instantly where emergency personnel and equipment are, for example, surgical teams can track things like sponges or instruments to ensure that nothing is left in places where they not ought to be.
For our growing population of elderly, wearable biometric devices, voice and gesture recognition interfaces, memory augmentation systems — all these may be essential (and cost-effective) tools in managing future complex health conditions while maintaining as much patient autonomy as possible.
Along with intelligent bathtubs, toilets, beds, refrigerators, rooms, and entire homes — literally anything that can be “colonized” by sensors, or “ambients”, which wirelessly port information over to an intelligent network — ‘everyware’ is slowly insinuating itself into what we can call “smart” health care.
The convergence of these technologies — RFID, ultra-wideband, and IPv6 (new internet protocol) — pointed at the needs of the health care industry, promises great advances in the convenience, cost and quality of care. But this promise also comes with great risks. Greenfield has pointed to many of these risks which can be easily transfered to what’s happening in health care. They include among other things:
- the exponential expansion of “surveillance” (including medical surveillance)
- the consequences of software/hardware failure
- the psychological impact of former latent, unmeasured information being made ‘public’
- the lack of awareness, or understanding, of being subject to these unannounced or invisible technologies
- the unpredictability of how these technologies will act — think HAL 2001 here — when all are interconnected
These technologies will come to us piece by piece, with the impact being a slow emerging boil, rather than a full and obvious onslaught of a total inter-connected system being thrust upon us. But the speed, storage, addressing, display, wireless, and technical standards for these systems already exists. That means ‘everyware’ is already a reality for some.
Yet thinking about these technologies holistically will be difficult. And according to Greenfield, it’s not sufficient simply to say “First, do no harm”. He advises that we take the time now to deliberate on the human consequences of all this and start to think through the social rules of the game. In that light he poses a few principles to be considered.
- Everyware must default to harmlessness
- Everyware must be self-disclosing
- Everyware must be conservative of face
- Everyware must be conservative of time
- Everyware must be deniable (opting out)
The recognition of these principles, along with educating ourselves on these new technologies is the starting position. The race will be long. The outcome will determine, as Greenfield observes, whether we’ll “develop an everyware that suits us, as opposed to the other way around.”
