Jessica DaMassa cracks her whip and in just 2 minutes gets answers out of me about the bidding for #athenahealth, the new clinics at #Amazon, the #FDA approving #NaturalCycles as a contraceptive, and the tech giants getting on stage unprompted at ONC’s Blue Button 2.0 day to tell the world that they are going to fix the interoperability problem. Oh, and a shout out to THCB’s 15th birthday–Matthew Holt
All of you Meaningful Use and Health IT junkies should read Data for Individual Health Although long, it’s definitely worth a scan by everyone who cares about health tech. This is the third JASON-related report in a year out of ONC and it comes a month or so before the planned release of the first details of ONC’s announced 10yr plan. I think there’s a reason for that much of it introduced by ONC’s earlier post.
There are three key points I would highlight:
First, and most important, this report suggests that HIPAA Covered Entities (mostly hospitals, doctors and their EHRs) are no longer the center. The future, labeled as the Learning Health System, now makes mobile and patient-centered technology equally important as part of the architecture and talks about interoperability with them rather than “health information exchange” among HIPAA CE’s and their Meaningful Use mandates.
Second, this JASON report, unlike the previous two, does not talk about Meaningful Use any more. That money is spent. A lot of orgs are lobbying against any more MU mandates and, although I’m pretty sure there will be a Stage 3, it could be toothless or very much delayed.
Third, Direct, the original Blue Button, Blue Button Plus Push, and CCDA files are pretty much history. Although the JASONs don’t say it as plainly as I am, document-based interoperability has failed and we’re moving on to Application Programming Interfaces (APIs) that don’t use CCDA or any of the stuff mandated by MU 1 and 2. Blue Button Plus Pull and FHIR, both with a modern industry-standard OAuth security scheme, are the future for all sorts of good reasons which you need to read the JASON reports with some care to understand. It’s all there.
Health primarily happens outside the doctor’s office—playing out in the arenas where we live, learn, work and play. In fact, a minority of our overall health is the result of the health care we receive. If we’re to have an accurate picture of health, we need more than what is currently captured in the electronic health record.
That’s why the U.S. Department of Health and Human Services (HHS) asked the distinguished JASON group to bring its considerable analytical power to bear on this problem: how to create a health information system that focuses on the health of individuals, not just the care they receive. JASON is an independent group of scientists and academics that has been advising the Federal government on matters of science and technology for over 50 years.
Why is it important to pursue this ambitious goal? There has been an explosion of data that could help with all kinds of decisions about health. Right now, though, we do not have the capability to capture and share that data with those who make decisions that impact health—including individuals, health care providers and communities.
The new report, called Data for Individual Health, builds upon the 2013 JASON report, A Robust Health Data Infrastructure. It lays out recommendations for an infrastructure that could not only achieve interoperability among electronic health records (EHRs), but could also integrate data from all walks of life—including data from personal health devices, patient collaborative networks, social media, environmental and demographic data and genomic and other “omics” data.
At the recent Health 2.0 Conference in Santa Clara, co-chair Matt Holt expressed frustration about the difficulty of getting copies of his young daughter’s medical records. His experience catalyzed a heated discussion about individuals’ electronic access to their own health information. Many people are confused about or unaware of their legal rights, the policies that support those rights, and the potential implications of digital access to health data by individuals. The Health 2.0 conference crowd included 2000 entrepreneurs, consumer technology companies, patient advocates, and other potentially “disruptive” forces in healthcare, in addition to more traditional health system players.
Why is this topic so important? Until now, most people haven’t accessed their own health records, whether electronically or in paper, and I believe that making it easier to do so will help tip the scales toward more meaningful consumer/patient engagement in healthcare and in health. Access by individuals and their families to their own health records can empower them to coordinate care among multiple healthcare providers, find and address dangerous factual errors, and take advantage of a growing ecosystem of apps and tools for improving health-related behaviors, saving money on health services, and getting more convenient, personalized care.
A shorthand phrase for this kind of personal empowerment through access to digital health data is “Blue Button,” which is also the name of a public-private initiative in which hundreds of leading healthcare organizations across the US participate. The Blue Button Initiative is bolstered by the electronic access to health information requirements for patients in the “Meaningful Use” EHR Incentive Program, which is administered by CMS (the Centers for Medicare & Medicaid Services) with companion standards and certification requirements set by ONC (the Office of the National Coordinator for Health Information Technology).Continue reading…
Matthew Holt interviewed Jacob Reider, Deputy National Coordinator for Health Information Technology and Chief Medical Officer at the ONC, ahead of his appearance at the 8th Annual Health 2.0 Fall Conference. Jacob will be participating in several panels at Health 2.0, beginning with the Monday main stage panel “Smarter Care Delivery: Amplifying the Patient Voice”.
In this interview, Jacob gives an overview of the HITECH program, the question of interoperability, and the broad adoption of technology in health care as an industry.
Matthew Holt: So, let’s touch base on a couple of things. You’ve been in ONC some time now. Let’s talk about how the general HITECH program has gone and is going. If you were to get to rate it, the spread of EMRs and the usefulness of them, their usability, how would you say we’re doing so far?
Jacob Reider: I think we’re doing very well. Some of your readers know I went to college at a place that had no grades. So I’ll give you the narrative score.
The narrative score is that the program has been very successful achieving the goals that were defined at the outset. So the first iteration of the program, stage one, was all about getting organizations to adopt Health Information Technology, and I think all of the metrics that we’ve seen have validated that the program has been quite successful in accelerating the adoption of Health Information Technology, in both hospitals and practices. That doesn’t mean that we’re finished, but the vast majority of these organizations have now adopted Health Information Technology. Are there additional goals that we’d like to be able to meet? Absolutely, we’d like to see interoperability working better. As you mentioned, we would like the products to be more usable, and therefore, safer.
We’d like to see patients even more engaged than they currently are, so they have more access to the information in their records. We’d like to solve a problem that we’re starting to see in the industry, which I started to call hyperportalosis, which is that in any given community, there may be many portals that patients are expected to log in to. So we’re trying to think about how those problems can be solved in the next iteration of the HITECH program.
The Pharmacies and Retailers Say They’re In. Is the Blue Button Initiative About to Change Everything?
The Obama administration announced significant adoption for the Blue Button in the private sector on Friday.
In a post at the White House Office of Science and Technology blog, Nick Sinai, U.S. deputy chief technology officer and Adam Dole, a Presidential Innovation Fellow at the U.S. Department of Health and Human Services, listed major pharmacies and retailers joining the Blue Button initiative, which enables people to download a personal health record in an open, machine-readable electronic format:
“These commitments from some of the Nation’s largest retail pharmacy chains and associations promise to provide a growing number of patients with easy and secure access to their own personal pharmacy prescription history and allow them to check their medication history for accuracy, access prescription lists from multiple doctors, and securely share this information with their healthcare providers,” they wrote.
“As companies move towards standard formats and the ability to securely transmit this information electronically, Americans will be able to use their pharmacy records with new innovative software applications and services that can improve medication adherence, reduce dosing errors, prevent adverse drug interactions, and save lives.”
While I referred to the Blue Button obliquely at ReadWrite almost two years ago and in many other stories, I can’t help but wish that I’d finished my feature for Radar a year ago and written up a full analytical report.
Extending access to a downloadable personal health record to millions of Americans has been an important, steady shift that has largely gone unappreciated, despite reporting like Ina Fried’s regarding veterans getting downloadable health information.
According to the Office of the National Coordinator for Health IT, “more than 5.4 million veterans have now downloaded their Blue Button data and more than 500 companies and organizations in the private-sector have pledged to support it.”
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.
June 3rd was the kick-off for an amazing Challenge – the Blue Button Patient CoDesign Challenge. Developers everywhere are being invited by the Office of the National Coordinator to develop apps and other tools to use patient data, acquired via the Blue Button. You might be thinking: why is that so amazing? Because the entire Challenge has been designed to actively involve the ultimate users of the tool – patients. Imagine that!
Here are the details:
From now until June 11th, patients (which includes almost all of us) are invited to go to Health Tech Hatch to post their ideas about how they want to see their data used to create tools that they can use themselves or with their doctors. There are already over 50 ideas already posted, which include:
- Please help my wife manage our children’s immunizations
- A tool that simplifies the management of chronic multiple conditions,
- Make my prescription management stink less (my favorite)
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 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.