The Blocking of Health Information Undermines Interoperability and Delivery Reform

The secure, appropriate, and efficient sharing of electronic health information is the foundation of an interoperable learning health system—one that uses information and technology to deliver better care, spend health dollars more wisely, and advance the health of everyone.

Today we delivered a new Report to Congress on Health Information Blocking that examines allegations that some health care providers and health IT developers are engaging in “information blocking”—a practice that frustrates this national information sharing goal.

Health information blocking occurs when persons or entities knowingly and unreasonably interfere with the exchange or use of electronic health information. Our report examines the known extent of information blocking, provides criteria for identifying and distinguishing it from other barriers to interoperability, and describes steps the federal government and the private sector can take to deter this conduct.

This report is important and comes at a crucial time in the evolution of our nation’s health IT infrastructure. We recently released the Federal Health IT Strategic Plan 2015 – 2020 and the Draft Shared Nationwide Interoperability Roadmap. These documents describe challenges to achieving an interoperable learning health system and chart a course towards unlocking electronic health information so that it flows where and when it matters most for individual consumers, health care providers, and the public health community.

While most people support these goals, some individual participants in the health care and health IT industries have strong incentives to exercise control over electronic health information in ways that unreasonably interfere with its exchange and use, including for patient care.

Over the last year, ONC has received many complaints of information blocking. We are becoming increasingly concerned about these practices, which devalue taxpayer investments in health IT and are fundamentally incompatible with efforts to transform the nation’s health system.

The full extent of the information blocking problem is difficult to assess, primarily because health IT developers impose contractual restrictions that prohibit customers from reporting or even discussing costs, restrictions, and other relevant details. Still, from the evidence available, it is readily apparent that some providers and developers are engaging in information blocking. And for reasons discussed in our report, this behavior may become more prevalent as technology and the need to exchange electronic health information continue to evolve and mature.

There are several actions ONC and other federal agencies can take to address certain aspects of the information blocking problem. These actions are outlined in our report and include:

  • Proposing new certification requirements that strengthen surveillance of certified health IT capabilities “in the field.”
  • Proposing new transparency obligations for certified health IT developers that require disclosure of restrictions, limitations, and additional types of costs associated with certified health IT capabilities.
  • Specifying a nationwide governance framework for health information exchange that establishes clear principles about business, technical, and organizational practices related to interoperability and information sharing.
  • Working with the Centers for Medicare & Medicaid Services to coordinate health care payment incentives and leverage other market drivers to reward interoperability and exchange and discourage information blocking.
  • Helping federal and state law enforcement agencies identify and effectively investigate information blocking in cases where such conduct may violate existing federal or state laws.
  • Working in concert with the HHS Office for Civil Rights to improve stakeholder understanding of the HIPAA Privacy and Security standards related to information sharing.

While these actions are important, they do not provide a comprehensive solution to the information blocking problem. Indeed, the most definitive finding of our report is that most information blocking is beyond the current reach of ONC or any other federal agency to effectively detect, investigate, and address. Moreover, the ability of innovators and the private sector to overcome this problem is limited by a lack of transparency and other distortions in current health IT markets.

For these and other reasons discussed in our report, addressing information blocking in a comprehensive manner will require overcoming significant gaps in current knowledge, programs, and authorities. We believe that in addition to the actions above, there are several avenues open to Congress to address information blocking and ensure continued progress towards the nation’s health IT and health care goals.

Information blocking is certainly not the only impediment to an interoperable learning health system. But based on the findings in our report, it is a serious problem—and one that is not being effectively addressed. ONC looks forward to working with Congress, industry, and the health IT community to properly address this problem and ensure continued progress towards achieving the goals of an interoperable learning health system.

Karen DeSalvo, MD leads the Office of the National Coordinator for HIT. Jodi Daniel serves as director of the Office of Policy.


20 replies »

  1. Can someone remind me why we should pay attention to anything that comes out of ONC these days?

  2. $30 billion later instead of TCP/IP we have remonstrations to hospitals.

    It’s a good thing dollar is still the trading currency.

  3. Yes, I do. But The primary purpose of information exchange must be to improve the quality of patient care. If you want evidence of where this has been effective look to Sweden. Their Clinical Quality Registries form the core of their eHealth data integration processes.eg

    Many of the developmental and integration challenges that the Swedish Rheumatology Quality registry has faced are applicable to the context in the United States. It is therefore worthwhile to explore the Swedish national and local efforts for having a modular approach in building registry services, the use of standards, defined information structure and terminology, and using service platforms for vendor-independent integration.

    Quality Registries have achieved huge savings in costs to the economy through improvements in the quality of care. For a great analysis of cost savings see http://www.med.monash.edu.au/assets/docs/creps/2012/registrysig-2012dec-neilsoderlundandphilbarker-bcg.pdf. This shows overall cost to society, but it is now well established that higher quality care with reduced M&M is actually cost effective to HCOs also.
    The key to value based healthcare is using Outcomes data and interoperability, data sharing and transparency is essential to this: https://www.bcgperspectives.com/content/articles/health_care_public_sector_progress_toward_value_based_health_care/?chapter=4
    See also how the Louisianna Vaccination Registry and information exchange saved $4.6 million following Katrina http://www.stchome.com/media/publications/model_estimating_benefits_of_electronic_data_exchange_between_emrs_and_iis.pdf http://www.ncbi.nlm.nih.gov/pubmed/17545393.

  4. It would be nice to know quantitatively how often patients should, normatively, have their data sent to another provider or hospital or to themselves. What would be the right amount of data exchange? downloading or uploading? …for the optimum outcome.

    I think many patients want new eyeballs on their woes. I think much lab data and imaging needs repeating. I think the faxing of yore was about right. But I am willing to hear other viewpoints.

    Te principle purpose of hospital capital expenditure for EHRs and EMRs seems to be better control of the input factors. The purpose for federal espousal of digitization was for information gathering and legislation and regulation. About the same. Does anyone really believe interoperability is going to help the patient very much? It is time to know some quantitative

  5. As I sit here at midnight waiting to do an emergency case it sure would be nice to have access to the patient’s past medical and surgical history. Since his prior care was done at a competing facility I don’t have access. I never will as long as we are economic competitors.


  6. Simple, obvious point, ‘eh? Opacity = Margin. Efficient Markets corollary 101. Margin is inverse to transparency. How could it be otherwise?

    Patient data (a.k.a. “business intelligence”) are enormously expensive to originate and manage. Yet, we gloss over this “first mover disadvantage” reality and expect the curating organizations to provide their competitors with patient data gratis? Even under HIPAA 45 CFR 164.524 patients are advised to expect to pay “reasonable” transaction costs for obtaining “their own data.”

    Health IT policymakers and legislators need to address just compensation for provider-to-provider data exchange (the “interoperability” misnomer). Of course, the HITECH money is now pretty much all been disbursed, and there’s zero appetite on the Hill for any more federal incentives. All that remains are sanctions.

  7. Amazing that ONC is just discovering that organizations do not want to share their patient data or should I say sources of revenue.

    This is not a technical or policy problem. It is simply a business problem.

    What industry do you know where organizations are asked to share their sources of revenue (i.e customers) with each other? You are asking healthcare organizations to share their sources of revenue (i.e. customers\patients) with each other. You are asking vendors to make data portable so their customers (i.e. healthcare organizations) can more easily switch to another vendor.

    Other industries do not share customer data.

    Banks don’t share their customer data with other banks. Airlines do not share their customer data with other airlines. Retail stores do not share their customer data with other retailers. Transactional data for business purposes, yes, but not their customer data.

    You are asking healthcare organizations and providers to share their sources of revenue. Solve this market challenge and you might get customer data flowing.

  8. Emma, I agree with all your points. Others like Ross Koppel PhD and Scott Silverstein MD have written reams about the fact that EHRs are unsafe, difficult to use, and put the entire US population’s at risk because they were never tested.

    President Bush, President Obama, and Congress supported unleashing unproven health technology on the public. Glucometers and pacemakers are tested by the FDA before they can be used.

    But the most important and complex medical device of all, EHRs, require no testing for safety. In addition to putting people’s lives at risk, EHRs also sell and trade our most sensitive personal information.

  9. Thanks for pointing this out. Expecting payment reform to work when quality is opaque makes no sense and, as many academics discussing price transparency have pointed out, can actually make things worse.

    We have a health system with $1 Trillion of unwarranted care every year. The hospitals that have our data would lose most of that $Trillion if the data got out. What’s $30 Billion of incentives to these hospitals when they stand to lose 30 times that amount if our system becomes as efficient as other rich economies?

  10. Probably not. Blocking is a simple outcome of institutional fears that patients or physicians will take some or all of their business elsewhere and, as SS points out below, that unwarranted and low quality treatment will become transparent.

    The market failure in health IT is due to the fact that the EHR customers are the hospitals instead of the patients. Until that changes, interoperability will require more forcing. As Dr. Peel and Patient Privacy Rights point out, only a strong control and patient right of access can fix this in a market-based way. Technology regulations and standards will not make a meaningful difference because the hospitals face $1 Trillion reduction in unwarranted revenue if the patient data actually were to flow based on social and patient needs.

  11. Addendum:

    ONC does not care:

    The systems are not fit for purpose. The adverse events, errors, and near misses go unreported.

    This week, the doctor had CPOEed and order for BID potassium with a perameter to hold it if the serum k+ was > 4.6 mg%. the order on my palate was obfuscated by innumerable lines of instructions such that I missed the perameter and gave the potassium supplement when the serum potassium was 4.7, and the next day, 4.9.

    The doctor missed it because the MAR is terribly inaccessible and user unfriendly when accessed.

    The next day, the serum potassium level was at life threatening levels and I was beating on myself.

    Yet, I have no one to report this to, because, no one really cares.

  12. Pathetic. You should be ashamed. How many $ millions did this report cost? You reinvented the wheel.

    You conveniently failed to address the risks and adverse events from these devices themselves.

    So what? You interconnect a bunch of medical devices that have side effects of injury and death at an incidence that is unknown because there is not any mandatory reporting. Great!

    You are worried about interoperability yet you fail to address the crashes and EHR unavailability and aftermath, as recent;y experienced at all MedStar clinics in your neighborhood and state.

    Why is there not mandatory reporting of any and all EHR crashes and the deaths that arise from the mayhem and delays in care that are part and parcel of these crashes?

  13. As a clinical research scientist I am suprised that complaints regarding information blocking have not been identified due to individual providers fears re aggregation of their results potentially not showing their outcomes to be as good as they would like to think. This may be an underlying, but unvoiced, aspect of the market share rationale. I have experienced blocking of information for fully ethically and legislatively authorised clinical effectiveness research, where the only reason could be personal fears that their individual performance may be decernable from the study. Don’t underestimate individual competitiveness as being part of a hidden agenda to limit health dat transparency and sharing. This is a topic that needs to be specifically addressed also, if a solution is to be found.

  14. ONC is finally discovering the lack of interoperability??? It’s been blatantly obvious for years.

    The lack of interoperability started in 2002 when HHS cut patients out of data exchange by eliminating the patient’s right to give consent before PHI could be disclosed. Now it’s clear patients are the only ‘stakeholders’ motivated to disclose health data for treatment purposes.

    HHS put data holders in control of data exchange, ie of ‘interoperability’. Guess what? The data holders began to treat the nation’s health data as a corporate asset and to use it for their benefits, not ours.

    Patient Privacy Rights has pointed out the lack of ‘interoperability’ and the easy, cheap solution for years: restore patient control over data exchange.

    Here’s a blog from 2007: http://patientprivacyrights.org/2007/07/privacy-is-key-to-interoperability/

    And another blog from 2012:

    HHS abdicated its duty to ensure patients’ rights were built into HIT systems. Why? HHS is protecting corporations, not people. The lack of ‘interoperability’ is a massive technology design flaw engineered by industry & HHS.

    Hippocrates swore to keep patients’ sensitive information private. His oath not to disclose patient information without permission is the foundation of trust in physicians. It’s embedded in American law and Medical Ethics so sick people can trust the people who treat them.

    See: http://www.patientprivacyrights.org

  15. Isn’t there some way to get the market to do this interoperability job without forcing? The internet had the same problems and it devised layers that could be read by all operating systems. See OSI, Open System Interconnection. Java was also a “write once-run anywhere effort.” They can all use linux if they want. Or telnet, now pretty much SSH.

    Can’t we tell the customers of EHRs that the responsibility for creating a functional interoperable network lies with the vendors? They Do It. Put it in the purchase contracts. Each vendor has to become a node in their jointly created interoperability network. Why should the providers worry about this technical detail?

  16. Thanks to Karen and Jodi for raising this issue! This is critically important, and the large EHR companies and hospital systems are coming up with an array of reasons to block access to data, often hiding behind privacy and security as their excuse.

    I look forward to reading the report!

  17. Great work. Thank you ONC.

    Another post on THCB today provides direct evidence. https://thehealthcareblog.com/blog/2015/04/10/the-himss-version-of-voter-id-laws/

    According to early comments, the EHR industry wants more money for interoperability. I guess $30 Billion was not enough. Apparently, they need the money to erect costly identity verification barriers before patients can get their own data. Seems counterproductuctive.

    Providing patient access to our own data BEFORE anyone else can get it, for either clinical or research uses, is the only market-based way to keep this rapacious industry honest. Once the patient’s right of access is established, probably by Congress (as the post and some previous National Coordinators say) setting up information barriers becomes a huge business risk to the vendors and their hospital customers. With a patient access right in place, they risk the data moving out to Apple HealthKit, ResearchKit and similar platforms that provide simple privacy-preserving policies and usability that patients and practitioners can love.