Secrecy breeds suspicion. The role of secrecy in health care is practically non-existent so when we see examples of secrecy, as in the operational details of the Federal Data Services Hub, we get the recent outcry from a range of politicians and journalists waving privacy flags. For Patient Privacy Rights, this is a teachable moment relative to both advocates and detractors of the Affordable Care Act.
There’s a clear parallel between the recent concerns around NSA communications surveillance and health care surveillance under the ACA. Some surveillance is justified, to combat terrorism and fraud respectively, but unwarranted secrecy breeds suspicion and may not help our civil society.
“The Hub” is described by the government as:
“For all marketplaces, CMS [the Centers for Medicare and Medicaid Services] is also building a tool called the Data Services Hub to help with verifying applicant information used to determine eligibility for enrollment in qualified health plans and insurance affordability programs. The hub will provide one connection to the common federal data sources (including but not limited to SSA, IRS, DHS) needed to verify consumer application information for income, citizenship, immigration status, access to minimum essential coverage, etc.
CMS has completed the technical design, and reference architecture for this work, is establishing a cross-agency security framework as well as the protocols for connectivity, and has begun testing the hub. The hub will not store consumer information, but will securely transmit data between state and federal systems to verify consumer application information. Protecting the privacy of individuals remains the highest priority of CMS.”
Here’s where the secrecy comes in: I tried to find out some specific information about the Hub. Technical or policy details that would enable one to apply Fair Information Practice Principles? Some open evidence of privacy by design? Some evidence of participation by privacy experts? I got nothing. Where’s Mr. Snowden when we need him?
Three juicy lemons came through my inbox this week. The NY Times published an expose of why hip replacement surgery costs 5-10 times as much in the US as in Belgium even though it’s the same implant. JAMA published research and a superb editorial on the Views of US Physicians About Controlling Health Care Costs and CMS put out a request for public comment on whether physicians’ Medicare pay should be made public. Bear with me while I try to make lemonade, locally, from these three sour economic perspectives.
Here’s a super-concentrated summary of the three articles: The hip surgery is more expensive because, in the US, as many as 10 intermediaries mark-up the price of that same hip prosthesis. Then, Tilburt et al said in JAMA that “physicians report that almost everyone but physicians bears responsibility for controlling health care costs.” The physicians reported that lawyers (60%), insurance companies (59%), drug and device manufacturers (56%), even hospitals (56%) and patients (52%) bear a major responsibility to control health care costs. Finally, CMS is trying to balance the privacy interests of physicians with the market failure that my other two lemons illustrate.
Can we apply local movement principles to health reform? How much of our money can we keep with our neighbors? What policies and technologies would enable the health care locavore? The locavore health system couldn’t possibly be more expensive than what we have now and, as with food and crafts, more of the money we spend would benefit our neighbors and improve our community.
What’s behind the recent EHR public relations blitz and our passionate debate in The Health Care Blog? It’s fear for the Affordable Care Act’s future. Oh, the ACA can weather political challenge in the short term, but in the long run, only health cost containment will matter. EHRs are the ship that institutions are counting on to navigate payment reform and, from the institutional perspective, physicians and patients are just along for the ride. From the citizen perspective however, cost containment will be seen as rationing unless patients and physicians are appropriately engaged in the most costly decisions.
The impact of yet more regulations, such as Stage 3 Meaningful Use, could be too late to save the ACA. For now, the administration and those of us that hope the ACA succeeds must work to shift EHR vendors and their institutional customers toward patient engagement using the tools of policy guidance, public relations and federal procurement.
First, a crash course in health economics. If you have a few minutes, read Accountable Care Organizations: Can We Have Our Cake and Eat It Too? by Jessica L. Mantel. Otherwise, just struggle through the next two paragraphs summarizing why EHRs are the lynchpin of health reform via the ACA.
Cost containment requires either cost controls or a shift away from fee-for-service payment. The ACA is based on accountable care as an alternative to fee-for-service. Accountable Care Organization (ACO) is shorthand for the new health care payments regime. By paying ACO institutions instead of individual service providers, health insurance companies and Medicare provide direct economic incentives to reduce waste, lower costs and, if we’re not careful, withhold needed care. An ACO is by definition an organization or institutional construct.
The EHR is is not the Jedi knight’s lightsaber, it is an institutional tool designed to bind the individual service providers into the Federation’s collective. Not surprisingly, patient engagement is an afterthought.
Uwe Reinhardt said it perfectly in a Tuesday plenary but I can only paraphrase his point: “health information is a public good that brings more wealth the more people use it.” Or, as Doc Searls puts it: personal data is worth more the more it is used. Datapalooza is certainly the largest meeting of the year focused on health data, and our Health and Human Services data liberation army was in full regalia. My assessment is: so far, so good but, as always, each data liberation maneuver also reveals the next fortified position just ahead. This post will highlight reciprocity as a new challenge to the data economy.
The economic value of health data is immense. Without our data it’s simply impossible to independently measure quality, get independent second opinions or control family health expenses. The US is wasting $750 Billion per year on health care which boils down to $3,000 per year that each man, woman and child is flushing down the drain.
Data liberation is a battle in the cloud and on the ground. In the cloud, we have waves of data releases from massive federal data arsenals. These are the essential roadmap or graph to guide our health policy decisions. I will say no more about this because I expect Fred Trotter (who is doing an amazing job of leading in this space) will cover the anonymous and statistical aspects of the data economy. Data in the cloud provides the basis for clinical decision support.
It’s a busy time in Washington, DC. June 3 marks the Datapalooza and begins a week of cheering and reflection on the success of federal initiatives designed to improve health while reducing cost. This year, the big claim is “information following patients” – a combination of federal Stage 2 Meaningful Use regulations, federal Health Information Exchange guidelines and federal open pricing data policies. We’re surely beyond 1,000 pages of federal initiatives around health data and the policy fog seems to be getting thicker every day. The Independent Purchase Decision Support Test is my beacon for whether we’re headed in the right direction.
Here’s a quote from the Meaningful Use Implementation Guidelines to Assure Security and Interoperability just released by ONC:
“In effect, HISPs are creating “islands of automation using a common standard.” This will hamper information following patients where they seek care―including across organizational and vendor boundaries―to support care coordination and Meaningful Use Stage 2 requirements.”
How will “information following patients” improve health while reducing cost?
It all depends on where the patient goes to get what. Not surprisingly, federal Accountable Care Organizations and related accountable quality contracts with private payers are exactly about where the patient goes too. The difference between these health reform innovations and the old managed care approach is supposed to be the patient’s ability to choose where to go for a healthcare service. Will Stage 2 and the new federal health information exchange implementation guidelines actually lead to effective patient engagement or is it time to “reboot” the HITECH incentives as some have suggested?
The Independent Purchase Decision Support Test cuts through the techno-jargon and paternalistic framing and goes straight to the heart of the policies that influence the physician-patient decisions to drive health care quality and cost. This the essence of patient engagement and the place where the money in healthcare is actually spent.
The small news is that I formally joined Patient Privacy Rights as chief technology officer. I have been an extreme advocate for open data for years. For example, I’m a card-carrying member of the Personal Genome Project where I volunteer to post both my genome and most of my medical record. PPR, on the other hand, is well known for publicizing the harms of personal data releases. These two seemingly contradictory perspectives represent the matter-antimatter pair that can power the long march to health reform.
The value of personal medical data is what drives the world of healthcare and the key to health reform. The World Economic Forum says: “Personal data is becoming a new economic “asset class”, a valuable resource for the 21st century that will touch all aspects of society.” This “asset” is sought and cherished by institutions of all sorts. Massive health care organizations, research universities, pharmaceutical companies, and both state and federal regulators are eager to accumulate as much personal medical data as they can get and to invest their asset for maximum financial return. Are patient privacy rights just sand in the gears of progress?
It’s called Blue Button+ and it works by giving physicians and patients the power to drive change.
The US deficit is driven primarily by healthcare pricing and unwarranted care. Social Security and Medicare cuts contemplated by the Obama administration will hurt the most vulnerable while doing little to address the fundamental issue of excessive institutional pricing and utilization leverage. Bending the cost curve requires both changing physicians incentives and providing them with the tools. This post is about technology that can actually bend the cost curve by letting the doctor refer, and the patient seek care, anywhere.
The bedrock of institutional pricing leverage is institutional control of information technology. Our lack of price and quality transparency and the frustrating lack of interoperability are not an accident. They are the carefully engineered result of a bargain between the highly consolidated electronic health records (EHR) industry and their powerful institutional customers that control regional pricing. Pricing leverage comes from vendor and institutional lock-in. Region by region, decades of institutional consolidation, tax-advantaged, employer-paid insurance and political sophistication have made the costliest providers the most powerful.
The EHR vendor lock-in business model is under attack by frustrated physicians and patients and the reality that health care cost and quality are more opaque than ever. Doug Fridsma of ONC politely talks of the need to move from vertical integration of health care services to horizontal integration where patients can choose with their feet. Farzad Mostashari calls for moral behavior and price transparency. The Society for Participatory Medicine says “Gimme My DAM Data” and Patient Privacy Rights asks HHS to allow physicians to prescribe health IT without interference from the institution or the vendor.
The vendors’ response is a charm offensive called CommonWell Health Alliance with a pastel .org website. The website is presumably the official source of information about CommonWell and it lays out the members’ strategy to preserve the vendor lock-in business model for a few $Billion more. Ok, maybe more than a few.
The core of the CommonWell strategy is to avoid giving patients their data in a timely and convenient way.
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The big news at HIMSS13 was the unveiling of CommonWell (Cerner, McKesson, Allscripts, athenahealth, Greenway and RelayHealth) to “get the ball rolling” on data exchange across disparate technologies. The shame is that another program with opaque governance by the largest incumbents in health IT is being passed off as progress. The missed opportunity is to answer the call for patient engagement and the frustrations of physicians with EHRs and reverse the institutional control over the physician-patient relationship. Physicians take an oath to put their patient’s interest above all others while in reality we are manipulated to participate in massive amounts of unwarranted care.
There’s a link between healthcare costs and health IT. The past months have seen frustration with this manipulation by industry hit the public media like never before. Early this year, National Coordinator for Health Information Technology Farzad Mostashari, MD, called for “moral and right” action on the part of some EHR vendors, particularly when it comes to data lock-in and pricing transparency. On February 19, a front page article in the New York Times exposed the tactics of some of the founding members of CommonWell in grabbing much of the $19 Billion of health IT incentives while consolidating the industry and locking out startups and innovators. That same week, Time magazine’s cover story is a special report on health care costs and analyzes how the US wastes $750 Billion a year and what that means to patients. To round things out, the March issue of Health Affairs, published a survey showing that “the average physician would lose $43,743 over five years” as a result of EHR adoption while the financial benefits go to the vendors and the larger institutions.
According to Wikipedia, the Technological Singularity is the hypothetical future emergence of greater-than-human superintelligence through technological means. The Healthcare singularity could be the time when patients have access to better information and make better decisions than their physicians. The drive to this near future is fueled by the open and globaIized energy of patients as compared to physicians handicapped by closed and parochial health IT.
Physicians have skills. Institutions have capital. Patients have freedom, and that is what tips the information balance in their favor. When it comes to health IT, physicians and institutions are still busy installing closed, proprietary, single-vendor systems that erect strategic barriers to communications every chance they get. The protection of professional licensure and institutional consolidation gives both parties a sense of security even as the patient and policymaker barbarians are massing on the Web.
The Institute of Medicine just released Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Aside from reaffirming the $765 billion of “Excess Costs”, the study highlights the following:
The committee also believes that opportunities exist for attacking these problems— opportunities that did not exist even a decade ago.