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No, The Market Can’t Solve Health Data Interoperability Problems

Posted on July 6, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

I seldom disagree with John Halamka, whose commentary on HIT generally strikes me as measured, sensible and well-grounded. But this time, Dr. Halamka, I’m afraid we’ll have to agree to disagree.

Dr. Halamka, chief information officer of Beth Israel Deaconess Medical Center and co-chair of the ONC’s Health IT Standards Committee, recently told Healthcare IT News that it’s time for ONC and other federal regulators to stop trying to regulate health data interoperability into existence.

“It’s time to return the agenda to the private sector in the clinician’s guide vendors reduce the products and services they want,” Halamka said. “We’re on the cusp of real breakthroughs in EHR usability and interoperability based on the new incentives for outcomes suggested by MACRA and MIPS. {T}he worst thing we could do it this time is to co-opt the private sector agenda more prescriptive regulations but EHR functionality, usability and quality measurement.”

Government regs could backfire

Don’t get me wrong — I certainly appreciate the sentiment. Government regulation of a dynamic goal like interoperability could certainly backfire spectacularly, if for no other reason than that technology evolves far more quickly than policy. Regulations could easily set approaches to interoperability in stone that become outmoded far too quickly.

Not only that, I sympathize with Halamka’s desire to let independent clinical organizations come together to figure out what their priorities are for health data sharing. Even if regulators hire the best, most insightful clinicians on the planet, they still won’t have quite the same perspective as those still working on the front lines every day. Hospitals and medical professionals are in a much better position to identify what data should be shared, how it should be shared and most importantly what they can accomplish with this data.

Nonetheless, it’s worth asking what the “private sector agenda” that Halamka cites is, actually. Is he referring to the goals of health IT vendors? Hospitals? Medical practices? Health plans? The dozens of standards and interoperability organization that exist, ranging from HL7 and FHIR to the CommonWell Health Alliance? CHIME? HIMSS? HIEs? To me, it looks like the private sector agenda is to avoid having one. At best, we might achieve the United Nations version of unity as an industry, but like that body it would be interesting but toothless.

Patients ready to snap

After many years of thought, I have come to believe that healthcare interoperability is far too important to leave to the undisciplined forces of the market. As things stand, patients like me are deeply affected by the inefficiencies and mistakes bred by the healthcare industry’ lack of interoperability — and we’re getting pretty tired of it. And readers, I guarantee that anyone who taps the healthcare system as frequently as I do feels the same way. We are on the verge of rebellion. Every time someone tells me they can’t get my records from a sister facility, we’re ready to snap.

So do I believe that government regulation is a wonderful thing? Certainly not. But after watching the HIT industry for about 20 years on health data sharing, I think it’s time for some central body to impose order on this chaos. And in such a fractured market as ours, no voluntary organization is going to have the clout to do so.

Sure, I’d love to think that providers could pressure vendors into coming up with solutions to this problem, but if they haven’t been able to do so yet, after spending a small nation’s GNP on EMRs, I doubt it’s going to happen. Rather than fighting it, let’s work together with the government and regulatory agencies to create a minimal data interoperability set everyone can live with. Any other way leads to madness.

Dallas Children’s Health and Sickle Cell Patients: Cobbling Together a Sound Solution

Posted on June 23, 2016 I Written By

When Carl Bergman isn't rooting for the Washington Nationals or searching for a Steeler bar, he’s Managing Partner of EHRSelector.com, a free service for matching users and EHRs. For the last dozen years, he’s concentrated on EHR consulting and writing. He spent the 80s and 90s as an itinerant project manger doing his small part for the dot com bubble. Prior to that, Bergman served a ten year stretch in the District of Columbia government as a policy and fiscal analyst.

Sickle cell anemia (SCA) is a genetic, red blood cell condition, which damages cell walls impeding their passage through capillaries. Episodic, it is often extremely painful. It can damage organs, cause infections, strokes or joint problems. These episodes or SCA crises can be prompted by any number of environmental or personal factors.

In the US, African Americans are most commonly susceptible to SCA, but other groups can have it as well. SCA presents a variety of management problems in the best of circumstances. As is often the case, management is made even more difficult when the patient is a child. That’s what Children’s Health of Dallas, Texas, one of the nation’s oldest and largest pediatric treatment facilities faced two years ago. Children’s Health, sixty five percent of whose patients are on Medicaid, operates a large, intensive SCA management program as the anchor institution of the NIH funded Southwestern Comprehensive Sickle Cell Center.

Children’s Health problem wasn’t with its inpatient care or with its outpatient clinics. Rather, it was keeping a child’s parents and doctors up to date on developments. Along with the SCA clinical staff, Children’s Chief Information Officer, Pamela Arora, and Information Management and Exchange Director, Katherine Lusk, tackled the problem. They came up with a solution using all off the shelf technology.

Their solution? Provide each child’s caregiver with a free Verizon smartphone. Each night, they extracted the child’s information from EPIC and sent it to Microsoft’s free, vendor-neutral HealthVault PHR. This gave the child’s doctor and parents an easy ability to stay current with the child’s treatment. Notably, Children’s was able to put the solution together quickly with minimal staff and without extensive development.

That was two years ago. Since then, EPIC’s Lucy PHR has supplanted the project. However, Katherine Lusk who described the project to me is still proud of what they did. Even though the project has been replaced, it’s worth noting as an important example. It shows that not all HIE projects must be costly, time-consuming or resource intense to be successful.

Children’s SCA project points out the value of these system development factors:

  • Clear, understood goal
  • Precise understanding of users and their needs
  • Small focused team
  • Searching for off the shelf solutions
  • Staying focused and preventing scope creep

Each of these proved critical to Children’s success. Not every project lends itself to this approach, but Children’s experience is worth keeping in mind as a useful and repeatable model of meeting an immediate need with a simple, direct approach.

Note: I first heard of Children’s project at John’s Atlanta conference. ONC’s Peter Ashkenaz mentioned it as a notable project that had not gained media attention. I owe him a thanks for pointing me to Katherine Lusk.

New Effort Would Focus HIE Data Around Patients

Posted on June 7, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

In theory, doctors should be able to pull up all data available on a patient located within any networks to which they have access. In other words, not only should they be able to see any data on Patient A within the EMR where A’s care is documented, but also retrieve data on A from within any HIEs which connect with the EMR. But the reality is, that’s not always the case (in fact, it’s rarely the case).

To help weave together patient data strung across various HIEs, three exchanges have teamed up to pilot test the idea of a patient-centered data home (PCDH). While many health leaders have looked at the idea of putting patients in charge of their own data, largely by adding to or correcting existing records, getting patients involved in curating such data has been difficult at best.

In this model, Arizona Health-e Connection, western Colorado’s Quality Health Network and the Utah Health Information Network are testing a method of data sharing in which the other HIEs would be notified if the patient undergoes an episode of care within their network.

The alert confirms the availability and specific location of the patient’s clinical data, reports Healthcare Informatics. Providers will then be able to access real-time information on that patient across network lines by initiating a simple query. Unlike in other models of HIE data management, all clinical data in a PCDH will become part of a comprehensive longitudinal patient record, which will be located in the HIE where the patient resides.

The PCDH’s data sharing model works as follows:

  • A group of HIEs set up a PCDH exchange, sharing all the zip codes within the geographic boundaries that their exchanges serve.
  • Once the zip codes are shared, the HIEs set up an automated notification process which detects when there is information on the patient’s home HIE that is available for sharing.
  • If a patient is seen outside of their home territory, say in a hospital emergency department, the event triggers an automated alert which is sent to the hospital’s HIE.
  • The hospital’s HIE queries the patient’s home HIE, which responds that there is information available on that patient.
  • At that point providers from both HIEs and query and pull information back and forth. The patient’s home HIE pulls information on the patient’s out-of-area encounter into their longitudinal record.

The notion of a PCDH is being developed by the Strategic Health Information Exchange Collaborative, a 37-member HIE trade group to which the Utah, Arizona and Colorado exchanges belong.

Developing a PCDH model is part of a 10-year roadmap for interoperability and a “learning health system” which will offer centralized consent management and health records for patients, as well as providing national enterprises with data access. The trade group expects to see several more of its members test out PCDHs, including participants in Arkansas, Oklahoma, Indiana, Kentucky and Tennessee.

According to the Collaborative, other attempts at building patient records across networks have failed because they are built around individual organizations, geographies such as state boundaries, single EHR vendors or single payers. The PCDH model, for its part, can bring information on individual patients together seamlessly without disrupting local data governance or business models, demanding new technical infrastructure or violating the rights of local stakeholders, the group says.

Like other relatively lightweight data sharing models (such as the Direct Project) the PCDH offers an initial take on what is likely to be a far more complex problem. But it seems like a good idea nonetheless.

ZibdyHealth Adapts to Sub-Optimal Data Exchange Standards for a Personal Health Record

Posted on May 10, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

Reformers in the health care field, quite properly, emphasize new payment models and culture changes to drive improvements in outcomes. But we can’t ignore the barriers that current technology puts in the way of well-meaning reformers. This article discusses one of the many companies offering a patient health record (PHR) and the ways they’ve adapted to a very flawed model for data storage and exchange.

I had the honor to be contacted by Dr. Hirdey Bhathal, CEO/Founder of ZibdyHealth. Like many companies angling to develop a market for PHRs, ZibdyHealth offers a wide range of services to patients. Unlike, say, Google Health (of blessed memory) or Microsoft HealthVault, ZibdyHealth doesn’t just aspire to store your data, but to offer additional services that make it intensely valuable to you. Charts and visualizations. for instance, will let you see your progress with laboratory and device data over time. They call this a “Smart HIE.” I’ll look a bit at what they offer, and then at the broken model for data exchange that they had to overcome in the health care industry.

The ZibdyHealth application

Setting up an account with ZibdyHealth is as easy as joining Facebook. Once you’re there, you can create health information manually. The company is working with fitness device makers to allow automatic uploads of device data, which can then be saved as a standard Continuity of Care Document (CCD) and offered to doctors.

You can also upload information from your physician via their health care portal–with a degree of ease or difficulty depending on your provider–and share it with other clinicians or family members (Figure 1). You have fine-grained control over which medications, diagnoses, and other information to share, a form of control called segmentation in health care.

Figure 1. Zibdy discharge summary displayed on mobile device

Figure 1. Summary of visit in Zibdy

Dr. Bhathal would like his application to serve whole families and teams, not just individuals. Whether you are caring for your infant or your aging grandmother, they want their platform to meet your needs. In fact, they are planning to deploy their application in some developing nations as an electronic medical record for rural settings, where one healthcare provider will be able to manage the health data for an entire village.

Currently, ZibdyHealth allows speciality clinics to share information with the patient’s regular doctor, helps identify interactions between drugs provided by different doctors, and allows parents to share their children’s health information with schools. This consolidation and quick sharing of medical information will work well with minute clinics or virtual MD visits.

ZibdyHealth is HIPAA-compliant, and support highly secure 256-bit AES encryption for data exchange. Like health care providers, they may share data with partners for operational purposes, but they promise never to sell your data–unlike many popular patient networks. Although they sometimes aggregate anonymized data, they do so to offer you better services, not to sell it on the market or to sell you other services themselves.

In some ways, ZibdyHealth is like a health information exchange (HIE), and as we shall see, they face some of the same problems. But current HIEs connect only health care providers, and are generally limited to large health care systems with ample resources. PHR applications such as ZibdyHealth aim to connect physicians and patients with others, such as family members, therapists, nursing homes, assisted care facilities, and independent living facilities. In addition, most HIEs only work within small states or regions, whereas ZibdyHealth is global. They plan to follow a business model where they provide the application for free to individuals, without advertisements, but charge enterprises who choose the application in order to reach and serve their patients.

Tackling the data dilemma

We’d see a lot more services like ZibdyHealth (and they’d be more popular with patients, providers, and payers) if data exchange worked like it does in the travel industry or other savvy market sectors. Interoperability will enable the “HIE of one” I introduced in an earlier article. In the meantime, ZibdyHealth has carried out a Herculean effort to do the best they can in today’s health exchange setting.

What do they use to get data from patient portals and clinicians’ EHRs? In a phrase, every recourse possible.

  • Many organizations now offer portals that allow patients to download their records in CCD format. ZibdyHealth works with a number of prominent institutions to make uploading easy (Figure 2). Or course, the solution is always a contingent one, because the provider still owns your data. After your next visit, you have to download it again. ZibdyHealth is working on automating this updating process so that providers can feed this information to the patient routinely and, by uploading the discharge CCD as part of a patient’s discharge process, ensure an easy and accurate transition of care.

  • Figure 2. List of electronic records uploaded to Zibdy through their CCD output

    Figure 2. List of uploaded CCDs

  • If providers aren’t on ZibdyHealth’s list of partners, but still offer a CCD, you can download it yourself using whatever mechanism your provider offers, then upload it to ZibdyHealth. ZibdyHealth has invested an enormous amount to parse the various fields of different EHRs and figure out where information is, because the CCD is a very imperfect standard and EHRs differ greatly. I tried the download/upload technique with my own primary care provider and found that ZibdyHealth handled it gracefully.

  • ZibdyHealth also supports Blue Button, the widely adopted XML format that originated at the VA as a text file.

I see ZibdyHealth as one of the early explorers who have to hew a path through the forest to reach their goal. As more individuals come to appreciate the benefits of such services, roads will be paved. Each patient who demands that their doctor make it easy to connect with an application like ZibdyHealth will bring closer the day when we won’t have to contort ourselves to share data.

Our Uncontrolled Health Care Costs Can Be Traced to Data and Communication Failures (Part 2 of 2)

Posted on April 13, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The previous section of this article provided whatever detail I could find on the costs of poor communications and data exchange among health care providers. But in truth, it’s hard to imagine the toll taken by communications failures beyond certain obvious consequences, such as repeated tests and avoidable medical errors. One has to think about how the field operates and what we would be capable of with proper use of data.

As patients move from PCP to specialist, from hospital to rehab facility, and from district to district, their providers need not only discharge summaries but intensive coordination to prevent relapses. Our doctors are great at fixing a diabetic episode or heart-related event. Where we fall down is on getting the patient the continued care she needs, ensuring she obtains and ingests her medication, and encouraging her to make the substantial life-style changes that can prevent reoccurrences. Modern health really is all about collaboration–but doctors are decades behind the times.

Clinicians were largely unprepared to handle the new patients brought to them by the Affordable Care Act. Examining the impact of new enrollees, who “have higher rates of disease and received significantly more medical care,” an industry spokesperson said, “The findings underscore the need for all of us in the health care system, and newly insured consumers, to work together to make sure that people get the right health care service in the right care setting and at the right time…Better communication and coordination is needed so that everyone understands how to avoid unnecessary emergency room visits, make full use of primary care and preventive services and learn how to properly adhere to their medications.” Just where the health providers fall short.

All these failures to communicate may explain the disappointing performance of patient centered medical homes and Accountable Care Organizations. While many factors go into the success or failure of such complex practices, a high rate of failure suggests that they’re not really carrying out the coordinated care they were meant to deliver. Naturally, problems persist in getting data from one vendor’s electronic health record to another.

Urgent care clinics, and other alternative treatment facilities offered in places such as pharmacies, can potentially lower costs, but not if the regular health system fails to integrate them.

Successes in coordinated care show how powerful it can be. Even so simple a practice as showing medical records to patients can improve care, but most clinicians still deny patients access to their data.

One care practice drastically lowered ER admissions through a notably low-tech policy–refering their patients to a clinic for follow-up care. This is only the beginning of what we could achieve. If modern communications were in place, hospitals would be linked so that a CDC warning could go to all of them instantly. And if clinicians and their record systems were set up to handle patient-generated data, they could discover a lot more about the patients and monitor behavior change.

How are the hospitals and clinics responding to this crisis and the public pressure to shape up? They push back as if it was not their problem. They claim they are moving toward better information sharing and teamwork, but never get there.

One of their favorite gambits is to ask the government to reward them for achieving interoperability 90 days out of the year. They make this request with no groveling, no tears of shame, no admission that they have failed in their responsibility to meet reasonable goals set seven years ago. If I delivered my projects only 25% of the time, I’d have trouble justifying myself to my employer, especially if I received my compensation plan seven years ago. Could the medical industry imagine that it owes us a modicum of effort?

Robert Schultz, a writer and entrepreneur in health care, says, “Underlying the broken communications model is a lack of empathy for the ultimate person affected–the patient. Health care is one of the few industries where the user is not necessarily the party paying for the product or service. Electronic health records and health information exchanges are designed around the insurance companies, accountable care organizations, or providers, instead of around understanding the challenges and obstacles that patients face on a daily basis. (There are so many!) The innovators who understand the role of the patient in this new accountable care climate will be winners. Those who suffer from the burden of legacy will continue to see the same problems and will become eclipsed by other organizations who can sustain patient engagement and prove value within accountable care contracts.”

Alternative factors

Of course, after such a provocative accusation, I should consider the other contributors that are often blamed for increasing health care costs.

An aging population

Older people have more chronic diseases, a trend that is straining health care systems from Cuba to Japan. This demographic reality makes intelligent data use even more important: remote monitoring for chronic conditions, graceful care transitions, and patient coordination.

The rising cost of drugs

Dramatically increasing drug prices are certainly straining our payment systems. Doctors who took research seriously could be pushing back against patient requests for drugs that work more often in TV ads than in real life. Doctors could look at holistic pain treatments such as yoga and biofeedback, instead of launching the worst opiate addiction crisis America has ever had.

Government bureaucracy

This seems to be a condition of life we need to deal with, like death and taxes. True, the Centers for Medicare & Medicaid Services (CMS) keeps adding requirements for data to report. But much of it could be automated if clinical settings adopted modern programming practices. Furthermore, this data appears to be a burden only because it isn’t exploited. Most of it is quite useful, and it just takes agile organizations to query it.

Intermediaries

Reflecting the Byzantine complexity of our payment systems, a huge number of middlemen–pharmacy benefits managers, medical billing clearinghouses, even the insurers themselves–enter the system, each taking its cut of the profits. Single-payer insurance has long been touted as a solution, but I’d rather push for better and cheaper treatments than attack the politically entrenched payment system.

Under-funded public health

Poverty, pollution, stress, and other external factors have huge impacts on health. This problem isn’t about clinicians, of course, it’s about all of us. But clinicians could be doing more to document these and intervene to improve them.

Clinicians like to point to barriers in their way of adopting information-based reforms, and tell us to tolerate the pace of change. But like the rising seas of climate change, the bite of health care costs will not tolerate complacency. The hard part is that merely wagging fingers and imposing goals–the ONC’s primary interventions–will not produce change. I think that reform will happen in pockets throughout the industry–such as the self-insured employers covered in a recent article–and eventually force incumbents to evolve or die.

The precision medicine initiative, and numerous databases being built up around the country with public health data, may contribute to a breakthrough by showing us the true quality of different types of care, and helping us reward clinicians fairly for treating patients of varying needs and risk. The FHIR standard may bring electronic health records in line. Analytics, currently a luxury available only to major health conglomerates, will become more commoditized and reach other providers.

But clinicians also have to do their part, and start acting like the future is here now. Those who make a priority of data sharing and communication will set themselves up for success long-term.

Our Uncontrolled Health Care Costs Can Be Traced to Data and Communication Failures (Part 1 of 2)

Posted on April 12, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

A host of scapegoats, ranging from the Affordable Care Act to unscrupulous pharmaceutical companies, have been blamed for the rise in health care costs that are destroying our financial well-being, our social fabric, and our political balance. In this article I suggest a more appropriate target: the inability of health care providers to collaborate and share information. To some extent, our health care crisis is an IT problem–but with organizational and cultural roots.

It’s well known that large numbers of patients have difficulty with costs, and that employees’ share of the burden is rising. We’re going to have to update the famous Rodney Dangerfield joke:

My doctor said, “You’re going to be sick.” I said I wanted a second opinion. He answered, “OK, you’re going to be poor too.”

Most of us know about the insidious role of health care costs in holding down wages, in the fight by Wisconsin Governor Scott Walker over pensions that tore the country apart, in crippling small businesses, and in narrowing our choice of health care providers. Not all realize, though, that the crisis is leaching through the health care industry as well, causing hospitals to fail, insurers to push costs onto subscribers and abandon the exchanges where low-income people get their insurance, co-ops to close, and governments to throw people off of subsidized care, threatening the very universal coverage that the ACA aimed to achieve.

Lessons from a ground-breaking book by T.R. Reid, The Healing of America, suggests that we’re undergoing a painful transition that every country has traversed to achieve a rational health care system. Like us, other countries started by committing themselves to universal health care access. This then puts on the pressure to control costs, as well as the opportunities for coordination and economies of scale that eventually institute those controls. Solutions will take time, but we need to be smart about where to focus our efforts.

Before even the ACA, the 2009 HITECH act established goals of data exchange and coordinated patient care. But seven years later, doctors still lag in:

  • Coordinating with other providers treating the patients.

  • Sending information that providers need to adequately treat the patients.

  • Basing treatment decisions on evidence from research.

  • Providing patients with their own health care data.

We’ll look next at the reports behind these claims, and at the effects of the problems.

Why doctors don’t work together effectively

A recent report released by the ONC, and covered by me in a recent article, revealed the poor state of data sharing, after decades of Health Information Exchanges and four years of Meaningful Use. Health IT observers expect interoperability to continue being a challenge, even as changes in technology, regulations, and consumer action push providers to do it.

If merely exchanging documents is so hard–and often unachieved–patient-focused, coordinated care is clearly impossible. Integrating behavioral care to address chronic conditions will remain a fantasy.

Evidence-based medicine is also more of an aspiration than a reality. Research is not always trustworthy, but we must have more respect for the science than hospitals were found to have in a recent GAO report. They fail to collect data either on the problems leading to errors or on the efficacy of solutions. There are incentive programs from payers, but no one knows whether they help. Doctors are still ordering far too many unnecessary tests.

Many companies in the health analytics space offer services that can bring more certainty to the practice of medicine, and I often cover them in these postings. Although increasingly cited as a priority, analytical services are still adopted by only a fraction of health care providers.

Patients across the country are suffering from disrupted care as insurers narrow their networks. It may be fair to force patients to seek less expensive providers–but not when all their records get lost during the transition. This is all too likely in the current non-interoperable environment. Of course, redundant testing and treatment errors caused by ignorance could erase the gains of going to low-cost providers.

Some have bravely tallied up the costs of waste and lack of care coordination in health care. Some causes, such as fraud and price manipulation, are not attributable to the health IT failures I describe. But an enormous chunk of costs directly implicate communications and data handling problems, including administrative overhead. The next section of this article will explore what this means in day-to-day health care.

Research Shows that Problems with Health Information Exchange Resist Cures (Part 2 of 2)

Posted on March 23, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The previous section of this paper introduced problems found in HIE by two reports: one from the Office of the National Coordinator and another from experts at the Oregon Health & Science University. Tracing the causes of these problems is necessarily somewhat speculative, but the research helps to confirm impressions I have built up over the years.

The ONC noted that developing HIE is very resource intensive, and not yet sustainable. (p. 6) I attribute these problems to the persistence of the old-fashioned, heavyweight model of bureaucratic, geographically limited organizations hooking together clinicians. (If you go to another state, better carry your medical records with you.) Evidence of their continued drag on the field appeared in the report:

Grantees found providers did not want to login to “yet another system” to access data, for example; if information was not easily accessible, providers were not willing to divert time and attention from patients. Similarly, if the system was not user friendly and easy to navigate, or if it did not effectively integrate data into existing patient records, providers abandoned attempts to obtain data through the system. (pp. 76-77)

The Oregon researchers in the AHRQ webinar also confirmed that logging in tended to be a hassle.

Hidden costs further jacked up the burden of participation (p. 72). But even though HIEs already suck up unsustainable amounts of money for little benefit, “Informants noted that it will take many years and significantly more funding and resources to fully establish HIE.” (p. 62) “The paradox of HIE activities is that they need participants but will struggle for participants until the activities demonstrate value. More evidence and examples of HIE producing value are needed to motivate continued stakeholder commitment and investment.” (p. 65)

The adoption of the Direct protocol apparently hasn’t fixed these ongoing problems; hopefully FHIR will. The ONC hopes that, “Open standards, interfaces, and protocols may help, as well as payment structures rewarding HIE.” (p. 7) Use of Direct did increase exchange (p. 56), and directory services are also important (pp. 59-60). But “Direct is used mostly for ADT notifications and similar transitional documents.” (p. 35)

One odd complaint was, “While requirements to meet Direct standards were useful for some, those standards detracted attention from the development of query-based exchange, which would have been more useful.” (p. 77) I consider this observation to be a red herring, because Direct is simply a protocol, and the choice to use it for “push” versus “pull” exchanges is a matter of policy.

But even with better protocols, we’ll still need to fix the mismatch of the data being exchanged: “…the majority of products and provider processes do not support LOINC and SNOMED CT. Instead, providers tended to use local codes, and the process of mapping these local codes to LOINC and SNOMED CT codes was beyond the capacity of most providers and their IT departments.” (p. 77) This shows that the move to FHIR won’t necessarily improve semantic interoperability, unless FHIR requires the use of standard codes.

Trust among providers remains a problem (p. 69) as does data quality (pp. 70-71). But some informants put attitude about all: “Grantees questioned whether HIE developers and HIE participants are truly ready for interoperability.” (p. 71)

It’s bad enough that core health care providers–hospitals and clinics–make little use of HIE. But a wide range of other institutions who desperately need HIE have even less of it. “Providers not eligible for MU incentives consistently lag in HIE connectivity. These setting include behavioral health, substance abuse, long-term care, home health, public health, school-based settings, corrections departments, and emergency medical services.” (p. 75) The AHRQ webinar found very limited use of HIE for facilities outside the Meaningful Use mandate, such as nursing homes (Long Term and Post Acute Care, or LTPAC). Health information exchange was used 10% to 40% of the time in those settings.

The ONC report includes numerous recommendations for continuing the growth of health information exchange. Most of these are tweaks to bureaucratic institutions responsible for promoting HIE. These are accompanied by the usual exhortations to pay for value and improve interoperability.

But six years into the implementation of HITECH–and after the huge success of its initial goal of installing electronic records, which should have served as the basis for HIE–one gets the impression that the current industries are not able to take to the dance floor together. First, ways of collecting and sharing data are based on a 1980s model of health care. And even by that standard, none of the players in the space–vendors, clinicians, and HIE organizations–are thinking systematically.

Research Shows that Problems with Health Information Exchange Resist Cures (Part 1 of 2)

Posted on March 22, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

Given that Office of the National Coordinator for Health Information Technology (ONC) received 564 million dollars in the 2009 HITECH act to promote health information exchange, one has to give them credit for carrying out a thorough evaluation of progress in that area. The results? You don’t want to know.

There are certainly glass-full as well as glass-empty indications in the 98-page report that the ONC just released. But I feel that failure dominated. Basically, there has been a lot of relative growth in the use of HIE, but the starting point was so low that huge swaths of the industry remain untouched by HIE.

Furthermore, usage is enormously skewed:

In Q2 2012, for example, three states (Indiana, Colorado, and New York) accounted for over 85 percent of total directed transactions; in Q4 2013, five states (Michigan, Colorado, Indiana, New York, Michigan, and Vermont) accounted for over 85 percent of the total. Similarly, in Q2 a single state (Indiana) accounted for over 65 percent of total directed transactions; in Q4 2013, four states (California, Indiana, Texas, and New York) accounted for over 65 percent of the total. (p. 42)

This is a pretty empty glass, with the glass-full aspect being that if some states managed to achieve large numbers of participation, we should be able to do it everywhere. But we haven’t done it yet.

Why health information exchange is crucial

As readers know, health costs are eating up more and more of our income (in the US as well as elsewhere, thanks to aging populations and increasing chronic disease). Furthermore, any attempt to stem the problem requires coordinated care and long-term thinking. But the news in these areas has been disappointing as well. For instance:

  • Patient centered medical homes (PCMH) are not leading to better outcomes. One reason may be the limited use of health information exchange, because the success of treating a person in his own habitat depends on careful coordination.

  • Accountable Care Organizations are losing money and failing to attract new participants. A cynical series of articles explores their disappointing results. I suspect that two problems account for this: first, they have not made good use of health information exchange, and second, risk sharing is minimal and not extensive enough to cause a thoroughgoing change to long-term care.

  • Insurers are suffering too, because they have signed up enormous numbers of sick patients under the Affordable Care Act. The superficial adoption of fee-for-value and the failure of clinicians to achieve improvements in long-term outcomes are bankrupting the payers and pushing costs more and more onto ordinary consumers.

With these dire thoughts in mind, let’s turn to HIE.

HIE challenges and results

The rest of this article summarizes the information I find most salient in the ONC report, along with some research presented in a recent webinar by the Agency for Healthcare Research and Quality (AHRQ) on this timely topic. (The webinar itself hasn’t been put online yet.)

The ONC report covers the years 2011-2014, so possibly something momentous has happened over the past year to change the pattern. But I suspect that substantial progress will have to wait for widespread implementation of FHIR, which is too new to appear in the report.

You can read the report and parse the statistics until you get a headache, but I will cite just one more passage about the rate of HIE adoption in order to draw a broad conclusion.

As of 2015, the desire for actionable data, focus on MU 2 priorities, and exchange related to delivery system reform is in evidence. Care summary exchange rates facilitated through HIOs are high—for example, care record summaries (89%); discharge summaries (78%); and ambulatory clinical summaries (67%). Exchange rates are also high for test results (89%), ADT alerts (69%), and inpatient medication lists (68%). (p. 34)

What I find notable in the previous quote is that all the things where HIE use improved were things that clinicians have always done anyway. There is nothing new about sending out discharge summaries or reporting test results. (Nobody would take a test if the results weren’t reported–although I found it amusing to receive an email message recently from my PCP telling me to log into their portal to see results, and to find nothing on the portal but “See notes.” The notes, you might have guessed, were not on the portal.)

One hopes that using HIE instead of faxes and phone calls will lower costs and lead to faster action on urgent conditions. But a true leap in care will happen only when HIE is used for close team coordination and patient reporting–things that don’t happen routinely now. One sentence in the report hints at this: “Providers exchanged information, but they did not necessarily use it to support clinical decision-making.” (p. 77) One wonders what good the exchange is.

In the AHRQ webinar, experts from the Oregon Health & Science University reported results of a large literature review, including:

  • HIE reduces the use lab and radiology tests, as well emergency department use. This should lead to improved outcomes as well as lower costs, although the literature couldn’t confirm that.

  • Disappointingly, there was little evidence that hospital admissions were reduced, or that medication adherence improved.

  • Two studies claimed that HIE was “associated with improved quality of care” (a very vague endorsement).

In the next section of this article, I’ll return to the ONC report for some clues as to the reasons HIE isn’t working well.

Will New Group Steal Thunder From CommonWell Health Alliance?

Posted on January 26, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

Back in March 0f 2013, six health IT vendors came together to announce the launch of the CommonWell Health Alliance. The group, which included Cerner, McKesson, Allscripts, athenahealth, Greenway Medical Technologies and RelayHealth, said they were forming the not-for-profit organization to foster national health data interoperability. (Being a cynical type, I immediately put it in a mental file tagged “The Group Epic Refused To Join,” but maybe that wasn’t fair since it looks like the other EHR vendors might have left Epic out on purpose.)

Looked at from some perspectives, the initiative has been a success. Over the past couple of years or so, CommonWell developed service specifications for interoperability and deployed a national network for health data sharing. The group has also attracted nearly three dozen HIT companies as members, with capabilities extending well beyond EMRs.

And according to recently-appointed executive director Jitin Asnaani, CommonWell is poised to have more than 5,000 provider sites using its services across the U.S. That will include more than 1,200 of Cerner’s provider sites. Also, Greenway Health and McKesson provider sites should be able to share health data with other CommonWell participants.

While all of this sounds promising, it’s not as though we’ve seen a great leap in interoperability for most providers. This is probably why new interoperability-focused initiatives have emerged. Just last week, five major HIT players announced that they would be the first to implement the Carequality Interoperability Framework.

The five vendors include, notably, Epic, along with athenahealth, eClinicalWorks, NextGen Healthcare and Surescripts. While the Carequality team might not be couching things this way, to me it seems likely that it intends to roll on past (if not over) the CommonWell effort.

Carequality is an initiative of The Sequoia Project, a DC-area non-profit. While it shares CommonWell’s general mission in fostering nationwide health information exchange, that’s where its similarities to CommonWell appear to end:

* Unlike CommonWell, which is almost entirely vendor-focused, Sequoia’s members also include the AMA, Kaiser Permanente, Minute Clinic, Walgreens and Surescripts.

* The Carequality Interoperability Framework includes not only technical specifications for achieving interoperability, but also legal and governance documents helping implementers set up data sharing in legally-appropriate ways between themselves and patients.

* The Framework is designed to allow providers, payers and other health organizations to integrate pre-existing connectivity efforts such as previously-implemented HIEs.

I don’t know whether the Carequality effort is complimentary to CommonWell or an attempt to eclipse it. It’s hard for me to tell whether the presence of a vendor on both membership lists (athenahealth) is an attempt to learn from both sides or a preparation for jumping ship. In other words, I’m not sure whether this is a “game changer,” as one health IT trade pub put it, or just more buzz around interoperability.

But if I were a betting woman, I’d stake hard, cold dollars that Carequality is destined to pick up the torch CommonWell lit. That being said, I do hope the two cooperate or even merge, as I’m sure the very smart people associated with these efforts can learn from each other. If they fight for mindshare, it’d be a major waste of time and talent.

Idiosyncratic Recommendations Based on Widespread Principles: the Health IT Policy Committee Report

Posted on December 21, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

Congress received an odd document last week from an advisory committee on Health IT. It takes an unexpectedly new–and demandingly detailed–approach to the perennial problem of health record interoperability. However, if one analyzes the authors’ reasoning, it turns out to be based on unstated principles that are widely accepted in health care:

  1. The market is broken, and the government must intervene either through incentives or through requirements.

  2. The intervention should be based on operational or clinical goals, not dictating the adoption of specific technologies.

  3. Policy-makers should pick off low-hanging fruit through goals that produce potentially large benefits with relative ease.

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