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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.

Complex Technologies Lurk Within Simple Interfaces – A Lesson for Health Care

Posted on November 13, 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.

Technologists are justly proud of the complex problems they solve. What’s hardest is hiding that complexity from the end-user. When a great magician performs, the audience is not aware of the excruciating practice he put into the Disappearing Coin trick (I have tried to learn it). In the same, complex analytics and personalization may have to hide behind a simple one-button device.

The demands placed by health consumers on health technology were laid out persuasively by David Inns, CEO of GreatCall, at the recent Connected Health Conference. His reasoning could be proposed as a kind of classic syllogism:

  • Major premise: technologies continually advance, whereas people are most comfortable with the technologies they learned when young;

  • Minor premise: health needs are concentrated among the elderly or middle-aged;

  • Conclusion: the people most in need of health technology will not be comfortable with the latest technology.

Translated into practical advice, this means that any personal health technology must adapt to multiple interfaces. If an individual has the latest iPhone, that’s great. If she prefers a simple flip phone, let her use that. And if she has nothing and is willing to tolerate only a device she wears around the neck with a button, let her have it.

Let’s shift gears for a moment (for those readers who remember manual transmissions). What does GreatCall offer its clients?

GreatCall is a typical–though technologically advanced–component of a a wellness program or patient-centered health medical home. It allows older adults or disabled people to keep in touch with caregivers, both family members and professional caregivers. The individual obtains from GreatCall a device with 5 Star Service that he or she keeps close at hand. GreatCall learns the individual’s habits: it knows what a visit to the doctor looks like, a Sunday in church, etc. The software that powers the GreatCall Link app notices when something worrisome happens, such as a person staying in bed very late, not getting out of the house regularly, or leaving the house at odd times. It starts by notifying the family caregiver.

If a change has been flagged as urgent and a family caregiver fails to respond, GreatCall can escalate the issue to a 5 Star operator who can assist with such situations on a 24/7 basis. Everyday behaviors, such as medication adherence, can also be monitored.

The GreatCall Link app can also give individuals and their caregivers summaries of the individual’s status. These summaries are not presented as numerical lists or even two-dimensional charts, which would be hard for non-techies to understand. Instead, GreatCall creates a written paragraph that summarizes whether the older adult has engaged in more activity or less, and similar information.

What technologies are necessary for GreatCall to carry out its mission? First, there must be ways for the individual to communicate easily with his or her device. Even a flip phone can be enhanced with secure apps to accept messages from users.

GPS is also a critical component, but GreatCall adds another layer of positioning–A-GPS or assisted GPS. First, it enhances satellite-based GPS with the precision provided by cell towers when someone is indoors and satellites can’t provide location information. Second, GreatCall tracks changes in location over time to account for errors. A GPS system may report that a patient is two blocks from her apartment at 2:00 in the morning when actually she is safe in bed. Data collection and analytics allows GreatCall to avoid a panic call–but all of this sophistication lies behind a simple interface.

In the cloud, GreatCall stores the necessary information to match a user’s location with her favorite haunts and to contact caregivers or family members when necessary. Data is carefully protected and not shared with anyone outside GreatCall.

I’ve been intrigued by the GreatCall service because it combines fancy analytical technology with an interface that adapts to the needs of the user, whether a tech-savvy active ager or a 90-year old with more serious cognitive or health issues. They represent an inspiring story of investigating their users, understanding them empathetically, and offering their advanced technologies in a service that is likely to win adoption. Every app developer should carry out research like this.