Future of Health IT: Trends and Scenarios

NJIT Researcher Develops New Algorithm Cluster To Data Mine Health Records

“Large collections of electronic patient records have long provided abundant, but under-explored information on the real-world use of medicines. But when used properly these records can provide longitudinal observational data which is perfect for data mining,” Duan said. “Although such records are maintained for patient administration, they could provide a broad range of clinical information for data analysis. A growing interest has been drug safety.”

In this paper, the researchers proposed two novel algorithms—a likelihood ratio model and a Bayesian network model—for adverse drug effect discovery. Although the performance of these two algorithms is comparable to the state-of-the-art algorithm, Bayesian confidence propagation neural network, by combining three works, the researchers say one can get better, more diverse results.

via www.njit.edu

I saw this a few weeks ago, and while I haven't had the time to delve deep into the details of this particular advance, it did at least give me more reason for hope with respect to the big picture of which it is a part.

It brought to mind the controversy over Vioxx starting a dozen or so years ago, documented in a 2004 article in the Cleveland Clinic Journal of Medicine. Vioxx, released in 1999, was a godsend to patients suffering from rheumatoid arthritic pain, but a longitudinal study published in 2000 unexpectedly showed a higher incidence of myocardial infarctions among Vioxx users compared with the former standard-of-care drug, naproxen. Merck, the patent holder, responded that the difference was due to a "protective effect" it attributed to naproxen rather than a causative adverse effect of Vioxx.

One of the sources of empirical evidence that eventually discredited Merck's defense of Vioxx's safety was a pioneering data mining epidemiological study conducted by Graham et al. using the live electronic medical records of 1.4 million Kaiser Permanente of California patients. Their findings were presented first in a poster in 2004 and then in the Lancet in 2005. Two or three other contemporaneous epidemiological studies of smaller non-overlapping populations showed similar results. A rigorous 18-month prospective study of the efficacy of Vioxx's generic form in relieving colon polyps showed an "unanticipated" significant increase in heart attacks among study participants.

Merck's withdrawal of Vioxx was an early victory for Big Data, though it did not win the battle alone. What the controversy did do was demonstrate the power of data mining in live electronic medical records. Graham and his colleagues were able to retrospectively construct what was effectively a clinical trial based on over 2 million patient-years of data. The fact that EMR records are not as rigorously accurate as clinical trial data capture was rendered moot by the huge volume of data analyzed.

Today, the value of Big Data in epidemiology is unquestioned, and the current focus is on developing better analytics and in parallel addressing concerns about patient privacy. The HITECH Act and Obamacare are increasing the rate of electronic biomedical data capture, and improving the utility of such data by requiring the adoption of standardized data structures and controlled vocabularies.

We are witnessing the dawning of an era, and hopefully the start of the transformation of our broken healthcare system into a learning organization.

 

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The big-data revolution in US health care: Accelerating value and innovation | McKinsey & Company

Data Mining: So What's the Big Deal?

The Cost of Fear | Why Docs Don't Embrace Technology (Dr. Rob)

I recently read a post on Dr. Rob's Musings of a Distractibel Mind blog on the barriers to adoption among primary care providers and their consultants. I found it very insightful. It opens with a description of an interaction between Dr. Rob and a consultant, in which he offers to exchange information via email and met with silence followed by a polite refusal. He goes on:

This is a typical reaction I get from my colleagues when suggest using the new-fangled communication tool called email.  The palms sweat, the speech stumbles, and the awkwardness is thick in the air.  It’s as if I am suggesting they join me in an evil conspiracy, or as if I am asking them to join my technology nerd cult.  There is a culture of fear in our healthcare system; it’s a wall against change, a current of stubbornness, a root of suspicion that looks at anything from the outside as a danger.  Instead of embracing technology, doctors see it as a tool in the hands of others intent on controlling them.  They see it as a collar on their neck that they only wear because others are stronger than them.

via distractible.org

Email, Fax, and HIPAA

Comments on the blog suggested that the objections might be based in part on security concerns. The consultant may prefer fax over email as a better way to protect patient privacy.

Sadly, many folks think that faxes are somehow encrypted and therefore secure, but they are not. Their advantage over email in this respect is that faxes contain image data, which would be harder to mine for useful information than the plain text of most email. Transmitting HIPAA PHI in either is a violation of the HIPAA Security and Privacy Rules.

There are ways of encrypting both fax and email transmissions. The former requires a commercial product of some sort, the latter either a commercial solution or arcane and cumbersome freeware technologies.

It seems like a better approach would be a shared system that uses HTTPS for all communication. GMail can do this, and HTTPS is now GMail's default transport layer for its user interface, but whether or not communication with any remote mail system is secure is situation-dependent and opaque to the sender and receiver. It is unclear whether the GMail databases are HIPAA Security compliant. Our Health System uses Groupwise for internal communications, which is encrypted both in transport and storage, with all storage maintained inside the data centers and behind the firewalls of the covered entity.

PHR systems like Google Health and Microsoft HealthVault offer another alternative. In both cases the information is "owned" by the patient, who must grant access explicitly to others; all inter-system communication over public channels is encrypted. DOD's MiCARE system (http://bit.ly/dlz2iW) interfaces with both PHRs, providing relatively painless and secure sharing of health information between and among primary, secondary, and tertiary care providers, consulting clinicians, and non-clinical care providers. The only catch is that the patient must trust the MiCARE system to identify, authenticate and authorize external systems that need to read from or write to the PHR.

Whether Google Health and HealthVault are truly secure is an open question. I have found no explicit assertion from either that their back-end databases are encrypted, though both employ extensive physical and administrative controls at their data centers. Not providing any details of their technical controls (e.g. encryption of databases) is probably wise, since any information at all would be potentially useful to hackers. Still, an assertion that the back-end database are encrypted would be appreciated by patients and by liability-sensitive providers accessing their systems.

The Real Issue

All that said, the most substantive objections to the use of email in the minds of healthcare providers are probably social and psychological rather than legal or technical. Use of email may be perceived as a slippery slope to being lured or compelled into more extensive IT adoption. Primary care physicians in particular are late adopters of technology, and with the lack of emphasis on usability in many systems currently available, it is difficult to blame them for their reluctance in this regard.

I recently sat through a vituperative diatribe from a family physician whose employer adopted one of the major EMR provider's systems over a year ago, and she stated that the system actively interfered with her ability to provide care. Her objections were multiple, but most prominent were twofold.

First, the system demanded excessive navigation due to inflexible and poorly designed user experience design and information architecture, leading to severe reduction of direct contact with the patient and broken concentration. Second, the system overwhelmed her with prompts and reminders she had long since determined were irrelevant for a given patient. The system provided no way to suppress them, which she was told was due to liability issues.

Another physician I overheard in the YMCA locker room was lamenting the fact that computerization had led to a requirement that he spend more than half of what had previously been his lamentably small amount of free time on nights and weekends updating the EMR. This was in his view better than attempting to use the EMR system in situ.

I know there are many success stories in primary care EMR adoption. Dr. Rob is one of them, and I personally know of a number of others, including my own family physician. The Federal initiative to computerize primary care is laudable, even though the road ahead will be rocky for some time to come.

Hopefully the systems that end up dominating the primary care EMR marketplace will succeed based on usability, quality, and workflow flexibility rather than on company name. The enterprise-system vendor offerings in the primary care arena tend to be dumbed-down, check-the-box knockoffs whose designers seem oblivious to the unique and highly variable requirements of primary care clinics and practices. Which vendor(s) will succeed, and on what basis, and with what ultimate effect on the public health, only time will tell.

Stimulus Fuels Gold Rush For Electronic Health Systems: Huffington Post

I heard about this story on Huffington Post from David Kibbe, founding father of the Clinical Groupware Collaborative (CGwC). Here's a quote that struck my eye:

Federal officials won't decide until early next year which types of systems to certify. But some of the world's largest companies, including General Electric, Microsoft, Dell and German-based Siemens Corp., already are working hard to sign up doctors and hospitals.

The potential market is vast: Fewer than one in five of the nation's approximately 600,000 doctors and 5,000 hospitals now use the technology, but by 2015 all are supposed to be keeping their records electronically.

The government's spending, part of the Obama administration's $787 billion economic stimulus, promises to give as much as $44,000 to each doctor to spend on digitizing his or her health records.

"We've got to make sure the products sold are high quality," said Sharona Hoffman, a professor of law and bioethics at Case Western Reserve University School of Law who believes software defects could endanger patients and squander taxpayer dollars.

via www.huffingtonpost.com

Elsewhere there was a quote from Jonathan Bertman, a family doc from Rhode Island who has put together a low-priced EMR product I hadn't heard of before: AmazingCharts. The fact that I haven't heard of it is not surprising, given that I have become interested in EMRs for family practice fairly recently, and in the context of clinical research, not market research. Their product page had a quote that sums up concisely my personal view of the EMR/EHR industry:

Most EHRs are ridiculously priced and overwhelmingly complex, requiring servers, intricate networks, and hours upon hours of training which, in essence, are required to re-teach you and your staff how to practice and document the way their confusing program was designed.

from www.amazingcharts.com

I should make clear that with my two minutes on their site, I am in no position to pass judgment as to whether the AmazingCharts product actually solves the real problems involved in computerizing health care. In my experience most problems associated with deployment of new IT systems are related to the issues Jonathan Grudin identified back in the early '90's and wrote up in his ACM article, Groupware and social dynamics: Eight challenges for developers. The eight challenges he lists are for the most part social, not technical. Here's a key quote from one of the challenges that also serves as a succinct statement of the core problem:

Groupware may be resisted if it interferes with the subtle and complex social dynamics that are common to groups. The computer is happiest in a world of explicit, concrete information. Central to group activity, however, are social, motivational, political and economic factors that are rarely explicit or stable. Often unconsciously, our actions are guided by social conventions and by our awareness of the personalities and priorities of people around us, knowledge not available to the computer. ...[research has shown] that the social element can be central even to clerical work that seems routine.

The key technical elements in designing a system that can be successfully deployed are user experience design, and in particular user interface and workflow flexibility, extensibility, and adaptability. These are necessary, but not sufficient, components of the deployment process, which inevitably involves some degree of workplace transformation.

The transformation can be highly beneficial, but can only work if the in situ stakeholders are involved in the process, and involved to such a degree that they feel they own the system. This can only occur through intensive communication, both formal and informal, between the vendor, end users, and practice leadership.

With respect to the Huffington Post piece, what is most fascinating to me is the spectrum of comments. I don't have time to go into it now, but one thing is clear: there's a lot of controversy around the Federal initiative to computerize health care, and the controversy is growing.

Obama and Biomedical Research Informatics: Reason for Hope?

Recently a friend at work sent an email to our workgroup in which he said:

In his weekly radio and video address describing what he called the American Recovery and
Reinvestment Plan, Obama spelled out five main goals. He said his plan proposes to:

-double renewable energy production and make public buildings more energy efficient;
-rebuild crumbling roads, bridges and schools;
-computerize the health care system;
-modernize classrooms, labs and libraries;
-and provide tax breaks to American workers.

So the computerization of our Health Care system
becomes a National Priority.

The implication is that Obama's presidency bodes well for our workgroup, which is devoted to biomedical research informatics. I wanted to share his thought and my reply, which follows:

While I share the enthusiasm for Obama's recovery plan, it may not
have much direct impact on research informatics units like ours, if
any at all. The effort to computerize healthcare was a key goal of the
Bush (W) administration, and while some progress has been made in
terms of determining evaluation criteria for EMR systems, from what I
have seen thus far, little or no interest has been exhibited with
respect to incorporating research informatics in the picture, in spite
of lobbying on several fronts.

The challenge of getting every American's health record computerized
is monumental, conceivably beyond the effort thus far put into space
exploration, and is fraught with contradictory economic and political
interests and motivations. This is not just an academic research
issue. Big Pharma has a stake in the integration of research
informatics into EMR systems (e.g. post-marketing surveillance), and
when Big Pharma's lobbyists can't get much traction, you know the
obstacles are formidable.

That said, another of Obama's campaign promises was to double the
budgets of the NIH and NSF. Let's cross our fingers and hope that
these promises are fulfilled as the massive economic stimulus and
recovery effort gets underway.  If they increased the government's
research agenda by even a fraction of what he promised, it will
benefit us significantly. Biomedical research informatics in
inextricably tied to biomedical research itself; progress in research
will be impossible without significant investments in biomedical
research informatics.

Moreover, all types of translation are becoming increasingly dependent
on informatics. Moving basic science discoveries into clinical
innovations and thence into evidence-based medicine and improvements
in public health can be greatly accelerated by computer and
information science.

All in all there is reason for hope, barring total economic meltdown
and the end of civilization as we know it.

In retrospect, I continue to hope Obama keeps his promise about doubling the NIH and NSF budgets. However, we have thus far in the past few months spent trillions of dollars on bailing out Wall Street, and a few billions on bailing out the auto industry. I wonder how much money will remain once we embark on our New New Deal.

‘Hospital of the Future’ Report Urges Major Changes | Joint Commission

The Joint Commission (JC) has just released a white paper entitled Health Care at the Crossroads: Guiding Principles for the Development of the Hospital of the Future. Not surprisingly, information technology (IT) permeates its recommendations. Surprisingly, the term "informatics" does not appear anywhere.

From the press release on the JC site (‘Hospital of the Future’ Report Urges Major Changes):

A report released today from The Joint Commission offers guiding principles and actions for the hospital of the future to meet the daunting challenges of older and sicker patients, patient safety and quality of care, economics and the work force. As these challenges escalate, hospitals can lead the effort to meet these demands.

Health Care at the Crossroads: Guiding Principles for the Development of the Hospital of the Future contends that hospitals must respond in new ways as escalating health care costs are hitting record highs and the conditions and care needs of hospitalized patients are growing more complex. The report is the work of an expert panel comprising hospital executives and clinical leaders, as well as experts in technology, health care economics, hospital design and patient safety. The roundtable analyzed how socio-economic trends, technology, the physical environment of care, patient-centered care values and ongoing staffing challenges will impact the hospital of the future.

It may be sad and disturbing that informatics isn't mentioned, because it could be indicative of two possibilities:

1. The JC panel of experts don't understand the difference between IT and informatics; or
2. They don't understand the valuable role biomedical informatics is playing in medicine at the moment on many fronts, including but not limited to the *omics revolution to evidence-based practice.

I may be sounding disappointed without reason, if for example the two concepts were deliberately conflated so as not to confuse the target audience, who I assume to be health system executive decisionmakers. As a cohort, they are not yet familiar with the nuances of informatics (by which I mean applied information science) and IT. I've yet to read the report, so I'm withholding final judgment.

I am happy to see socio-economic trends appearing first in the list of items the experts analyzed. That is highly likely to be a positive sign with respect to the validity of their recommendations, but I'm only cautiously optimistic. Here too, I'll see how I feel after reading the report.

Healthcare & Technology: The Hospital of the Future

I just discovered there is a new report by the Joint Commission, a link to which may be found in the Healthcare & Technology blog post entitled The Hospital of the Future, which is also the name of the JC report. Thanks to Deborah Leyva for pointing this out on the LinkedIn AMIA Group. Here's a bit of the blogger's commentary on the report:

It is no surprise that Patient-Centered care is at the core as "a partnership" between a patient and his/her providers. The Joint Commission suggests that technology adoption can play a major role in improving patient care, safety and quality. The transformation from paper to electronic records, according to the report, will involve:

• Making the business case (ROI) and acquiring funding
• Redesign of Business processes concurrent with technology implementation (a blast from my past)
• Extending the digital footprint beyond the hospital to the "Medical Home"
• Engage technology leaders for guidance (Maybe even those from other industries? Perhaps learning from the mistakes of others? Yes!)
• Improve workflow and minimize labor intensive activities (Double Yes!)

I haven't read the report yet myself, but it's a high-priority item on my to-do list. Meanwhile, though, there's a few other intriguing posts on the Healthcare & Technology blog I'm going to be reading first.

QUICKIE: Medicare fraud growing due to design of IT systems - FierceHealthIT

Another one from FierceHealthIT: Medicare fraud growing due to design of IT systems. In this case, about a criminal who deserves some sort of perverse award for a very efficient use of mobile computing.

One example of this [i.e. Medicare fraud] is the case of Rita Campos Ramirez who, using only a laptop, filed more than 140,000 Medicare claims for unnecessary equipment and services. Campos Ramirez, who has pled guilty to filing false claims, has since helped prosecutors win indictments against doctors and patients who accepted kickbacks for pretending to receive HIV infusion services.

Red herrings swimming around Google and Microsoft PHRs

I spent three days last week at the American Medical Informatics Association (AMIA) Spring Congress. I was there to present lessons learned from Michigan's $3.2M NIH Roadmap contract funded under the 2003 "Re-Engineering the Clinical Research Enterprise" Broad Agency Announcement (BAA) in the Clinical Research Informatics track, but I spent a few of the sessions in the Personal Health Records (PHR) track.

Unsurprisingly, there was a lot of buzz in the PHR track about Google Health, and to a lesser degree, Microsoft HealthVault. Google Health was more prominent for several reasons, not all of which are enduringly pertinent: its public debut happened more recently; Google does not suffer from the Borg-like "Evil Empire" image from which Microsoft suffers; and Dr. Roni Zeiger, MD, Google Health Product Manager, was an eloquent and well-received speaker at one of the sessions.

That was Thursday. My presentations were on Friday right after lunch, so I was a bit distracted that morning and missed a couple of breakout sessions. After my time in the limelight, I spent a very inspiring hour talking with Bob DiLaura of Cleveland Clinic, during which we speculated about the future of PHRs. One assertion with which I believe we both agree is that the entry of these two major players is going to revolutionize the healthcare records "marketplace".

I put "marketplace" in quotes because in the USA a market implies exchange of value that can be represented in monetary terms. HealthVault and Google Health are free, and as FasterCures CEO Greg Simon said in one of the keynotes, "Free is the new money". Google and Microsoft will aim for volume, and monetization will come later. It's not terribly difficult to imagine a variety of ways huge volumes of consumer health records could be monetized without violating patient privacy. But there are a lot of red herrings in these waters. Let's look through the glass window in the bottom of the boat here and see what these red herrings look like.

Challenges facing translational biomedical research

I was at two different meetings last week at the NIH in Bethesda, MD, both of which were related to the fostering of clinical research networks. The first meeting, called "Clinical Research Networks: Building the Foundation for Health Care Transformation", was the culmination of the NIH Roadmap "Re-Engineering the Clinical Research Enterprise" program, in which a dozen academic health centers and other research institutions fulfilled contracts to do research and develop tools and techniques for the creation, care and feeding of clinical research networks.

The network concept was defined broadly to include disease-focused networks, practice-based research networks (PBRNs), transplant donor/recipient networks, and others. There were keynote speakers from the NIH leadership, but the bulk of the meeting consisted of panels composed of principal investigators discussing the lessons learned in the fulfillment of their contractual obligations. While each contract produced some sort of intellectual property, but the lessons learned were the primary goal of the program, and the lessons were rich and diverse.

Peter Suber's NIH public-access policy FAQ

Peter Suber at Earlham has published an FAQ concerning the NIH public-access policy. His FAQ may have been there for a while - the policy itself went into effect in 2006 - but it came to my attention due to an internal discussion we are having here. Here's the gist of the legislative intent behind the policy, which Peter has quoted from the House Rules Committee record:

The conferees are aware of the draft NIH policy on increasing public access to NIH-funded research. Under this policy, NIH would request investigators to voluntarily submit electronically the final, peer reviewed author's copy of their scientific manuscripts; six months after the publisher's date of publication, NIH would make this copy publicly available through PubMed Central. The policy is intended to help ensure the permanent preservation of NIH-funded research and make it more readily accessible to scientists, physicians, and the public. The conferees note the comment period for the draft policy ended November 16th; NIH is directed to give full and fair consideration to all comments before publishing its final policy. The conferees request NIH to provide the estimated costs of implementing this policy each year in its annual Justification of Estimates to the House and Senate Appropriations Committees. In addition, the conferees direct NIH to continue to work with the publishers of scientific journals to maintain the integrity of the peer review system.

In brief, the intent is to give the general public - taxpayers - access to the results of the research they paid for.

There are caveats galore.