Let’s recognize Healthcare.gov as the dawn of mass patient engagement – and applaud it. Before this website, patients were along for the ride. Employers choose most of the insurance benefits, hospital web portals are an afterthought, and getting anything done with an insurance company, for both doctors and patients, means a phone call and paper. Can you imagine going online to find out the actual cost and buy anything? All that changed with Healthcare.gov.
Information is valuable and not evenly distributed. The haves are immensely valuable corporations. The have nots are patients and doctors. Welcome to the world of health IT politics where the rich get richer ($20 Billion of “incentives” have caused massive health IT consolidation and a hidden health surveillance state) and the poor get frustrated (talk to an independent physician about their EHR or to a patient trying to access her own health records).
Information asymmetry drives $1 Trillion waste of our $2.7 Trillion health care cost. That waste is about $3,000 per year per citizen.
The politics of health IT policy are not left vs. right but institution vs. individual. Politicians and regulators alike are now scrambling to understand the role of health IT policy in that $3,000 annual waste per citizen.
The asymmetry that drives health IT policy is easy to understand when you consider that health IT is sold to corporations. As physicians and patients, we do not prescribe or buy information technology and we are paying the price through a total lack of price and quality transparency.
Continue reading “Information Asymmetry – The Politics of Health IT Policy”
Filed Under: Tech
Tagged: Adrian Gropper, Healthcare.gov, HIT Privacy, The Affordable Care Act, Transparency
Nov 9, 2013
… and a call to action. This case study is based on my meeting with the Center for Health Information and Analysis (CHIA) in my home state. CHIA is an all payers claims database, a massive collection of diagnoses, locations, dates and prices for all of your health services across all of your providers and insurers. Whether it’s claims or health records, almost every state and many private clearing houses are setting up to monitor you.
Your information can be used by business to manipulate prices for maximum profit, or by you to inform your choice of health insurance plans and health care providers.
Unfortunately, business can get your information but you can’t. This reflects an industry strategy to obstruct the market-based features of the Affordable Care Act. I hope you will take this case study, edit it, and file it with the Attorney General and Governor in your state to ask for your data as a consumer protection issue. That’s what I’m about to do.
My state is #1! Go Massachusetts! My state is #1 in health care costs. It’s also #1 in implementing a health insurance exchange (Romneycare 2006) and a leader in state surveillance with the 2012 cost containment law known as Chapter 224. Chapter 224 mandates various state surveillance mechanisms including a health information exchange that monitors encounters and an all payer claims database called “the center”.
The cost containment law also includes some consumer protections. Line 1909 states:
“To the maximum extent feasible, the center shall also make data available to health care consumers, on a timely basis and in an easily readable and understandable format, data on health care services they have personally received.”
Although the state surveillance is in place, and the price fixing that keeps us #1 is ongoing, the consumer protection part of the law is not implemented. So, I took the opportunity to meet with the executive director of CHIA and their chief legal counsel and get the scoop on why the state is not following the law. To paraphrase their explanation: “It’s too hard.”
Continue reading “State Surveillance Endangers the Affordable Care Act: A Case Study”
Filed Under: THCB
Tagged: Adrian Gropper, Center for Health Information & Analysis (CHIA), Consumer Directed Healthcare, Health Insurance Exchanges, Health Plans, Massachusetts, Pharma, The Affordable Care Act, The States
Oct 18, 2013
Thanks to the flood of new data expected to enter the health field from all angles–patient sensors, public health requirements in Meaningful Use, records on providers released by the US government, previously suppressed clinical research to be published by pharmaceutical companies–the health field faces a fork in the road, one direction headed toward chaos and the other toward order.
The road toward chaos is forged by the providers’ and insurers’ appetites for categorizing us, marketing to us, and controlling our use of the health care system, abetted by lax regulation. The alternative road is toward a healthy data order where privacy is protected, records contain more reliable information, and research is supported or even initiated by cooperating patients.
This was my main take-away from a day of meetings and a panel held recently by Patient Privacy Rights, a non-profit for whom I have volunteered during the past three years. The organization itself has evolved greatly during that time, tempering much of the negativity in which it began and producing a stream of productive proposals for improving the collection and reuse of health data. One recent contribution consists of measuring and grading how closely technology systems, websites, and applications meet patients’ expectations to control and understand personal health data flows.
With sponsorship by Microsoft at their Innovation and Policy Center in Washington, DC, PPR offered a public panel on privacy–which was attended by 25 guests, a very good turnout for something publicized very modestly–to capitalize on current public discussions about government data collection, and (without taking a stand on what the NSA does) to alert people to the many “little NSAs” trying to get their hands on our personal health data.
It was a privilege and an eye-opener to be part of Friday’s panel, which was moderated by noted privacy expert Daniel Weitzner and included Dr. Deborah Peel (founder of PPR), Dr. Adrian Gropper (CTO of PPR), Latanya Sweeney of Harvard and MIT, journalist Sydney Brownstone of Fast Company, and me. Although this article incorporates much that I heard from the participants, it consists largely of my own opinions and observations.
Continue reading “Chaos and Order: An Update From Patient Privacy Rights”
Filed Under: Uncategorized
Tagged: Adrian Gropper, Andy Oram, Big Data, HIEs, HIPAA, Hospitals, Meaningful Consent, Patient privacy, Patient Privacy Rights
Oct 16, 2013
Health IT Week demonstrated a double barrel strategy to segregate patient information from provider information. Providers already have the power to set prices and health IT plays the central role.
By rebranding HIPAA as “Meaningful Consent” and making patients second-class citizens in Meaningful Use Stage 2 interoperability, providers and regulators are working together to keep it that way.
Essential consumer protections such as price transparency or independent decision support are scarce in the US healthcare system. The journalists are shouting from the rooftops.
There’s $1 Trillion (yes, $3,000 per person per year) of unwarranted and overpriced health services steering the Federal health IT bus with an information asymmetry strategy. Those of us that want to see universal coverage succeed need the information transparency tools to drive for changes.
Here’s how it works: The department of Health and Human Services (HHS) controls the health IT incentives and regulations. HIPAA applies to most licensed health services providers. Laboratories and devices are regulated by Medicare and the FDA.
Unlicensed services offered directly to patients, such as personal health records, web info sites and apps are regulated by the FTC. Separate regulatory domains facilitate the segregation of information and contribute to the lack of transparency by making patient-directed services use delayed and degraded information. This keeps independent advice from FTC-regulated service providers from illuminating the specific abuses.
The segregation of patient information from “provider” information is the current federal regulatory strategy. It’s even more so in the states. By making patients into second-class citizens, the providers can avoid open scrutiny, transparent pricing, and independent decision support.
Federal regulators then create a parallel system where information is delayed, diluted, and depreciated by lack of “authenticity”. This is promoted as “patient engagement”. For regulators, it’s a win-win solution: the providers support the regulation that enables their price fixing and many patient advocates get to swoon over patient engagement efforts.
The proof of this strategy became clear on the first day of Health IT Week – the Consumer Health IT Summit.
Continue reading “A Troubling Strategy at Health IT Week”
Filed Under: Tech, THCB
Tagged: Adrian Gropper, Blue Button, HHS, HIPAA, HIT, HITECH Act, independent decision support, Meaningful Consent, Meaningful Use Stage 2, National Health IT Week
Sep 19, 2013
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?
Continue reading “The Federal Health Data Services Hub Hubbub”
Filed Under: Tech, THCB
Tagged: Adrian Gropper, data breaches, Federal Data Services Hub, HHS, NSA, Patient privacy, Privacy, The Affordable Care Act
Aug 15, 2013
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.
Continue reading “Enabling the Health Care Locavore”
Filed Under: OP-ED, THCB
Tagged: Adrian Gropper, CMS, Costs, Health Care Reform, Home Health Care, Incentives, Insurance, JAMA, local movements, locavore health system
Aug 11, 2013
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.
Continue reading “The Affordable Care Act Will Fail Without Patient Engagement”
Filed Under: OP-ED, THCB
Tagged: ACOs, Adrian Gropper, Blue Button Plus, EHR, HIT, patient engagement, Patients, The Affordable Care Act
Jul 22, 2013
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.
Continue reading “Datapalooza Report on Data Economics and a Call for Reciprocity”
Filed Under: THCB
Tagged: Adrian Gropper, Blue Button, Data, EHR, Health Datapalooza 2013, HIPAA, HIT, Meaningful Use
Jun 5, 2013
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.
Continue reading “The Independent Purchase Decision Support Test”
Filed Under: Uncategorized
Tagged: Adrian Gropper, EHR, Health Datapalooza 2013, health information exchange, HIT, Independent Purchase Decision Support Test, Interoperability, Meaningful Use, ONC
May 30, 2013
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?
Continue reading “Open Data Advocate Joins Patient Privacy Rights Group as Chief Technology Officer”
Filed Under: Tech, THCB
Tagged: Adrian Gropper, open data, Patient Privacy Rights, Patient Safety, personal health data
May 7, 2013