Future of Health IT: Trends and Scenarios

A "Learning Healthcare System": A good use of Big Data

An item in FierceHealthIT pointed me to an intriguing paper from the Institute of Medicine, Making the Case for Continuous Learning from Routinely Collected Data:

The availability and reliability of large volumes of relevant longitudinal digital data from a variety of clinical and nonclinical sources are core features of a system that learns from each care experience, a learning health system. Common clinical repositories include data from electronic health record (EHR) systems used to manage patient care and claims data necessary for billing purposes. In some cases, data sources can be linked, using either institution-specific identifiers or matching algorithms, to create disease-specific patient registries that enable research. Integration of large pools of disparate clinical data from EHRs and claims is a major function of health information exchanges, which will be increasingly important to ensure seamless management of health information across institutions. Nonclinical sources of patient information may also include data from retail sales of over-the-counter medications, dietary supplements, walking and running shoes, and personal preferences and behaviors.

A lot of what I've seen written about Big Data is misleading and faddish, an opinion I share with some folks at Gartner Group, among others, but the thesis of this paper has the ring of truth. I'm only partway through the paper, but it makes a lot of sense so far.

It does, however, bump up against another concern I have: the tension between wanting to see more data captured and made use of in primary care, and the critical requirement for direct, human patient-physician engagement in the clinical encounter. It's a theme I've blogged about before, in various forms (see the Forget Everything You Know link below). I'll be posting more about that in the near future, due to a couple other bits of reading I'm ploughing through at the moment.

 

 

Related articles

Forget Everything You Know About Healthcare Information Systems | healthsystemcio.com

Healthcare's Big Problem With Little Data

'Big data' in healthcare, more than just clinical

For or Against - Which Side Will Providers Choose in the Big Data Revolution?

Can Open Source solve the health information integration problem?

I have a vested interest in better health informatics at the primary care level, both because I am a patient and because of my consulting relationship with Cielo Medsolutions LLC. In the current political environment, with its emphasis on throwing money at the problem, I fear for the public health. Bad health IT is worse than no health IT.

How would I define good health IT at the primary care level? I define it in terms of accuracy and completeness.  For your electronic health record (EHR) to be accurate and complete, the information in it must be up-to-date and cover all key facts about the state of your health and the care provided to you. Because many patients have multiple providers, this means that your EHR must be available to all participating care providers, both to read and to update.

Providers often use different EHR systems from disparate vendors, most of whom store data in proprietary formats, and each of whom has a fiduciary responsibility to its shareholders to resist dilution of control over the health information managed by the vendor's software. Moreover, providers belong to different HIPAA covered entities (i.e. custodians of records containing HIPAA-protected health information).

Thus the challenges in achieving a seamlessly integrated health record are daunting, spanning the technical, political, and regulatory realms. Nonetheless, their is a significant push at the Federal level with bipartisan support to achieve health information integration.

Third-party payers have already compelled a degree of standardization with respect to some of the information in the EHR, though the information they need for efficient claims processing is only a subset of what is needed from the care provider perspective. Adequate or no, at least it's a start.

In addition to the provider and vendor challenges, both because providers can make data entry errors and because the patient does not always take the provider's advice, the record must also be available to the patient to read and update. This latter problem is a matter of providing a patient portal to the integrated EHR shared by the providers, and while it presents its challenges, this is an easier problem to solve than getting to the integrated EHR in the first place.

Solving the political challenges, both inter-vendor and at the governmental level, is outside my scope. I do, however, have some insights into the technical challenges to health information integration, in particular the syntactic and semantic obstacles that must be overcome.

Getting information out of proprietary systems is essential to making it available for integration, and there do exist commercial entities who specialize in "cracking" proprietary schemas. Recently, though, I learned of the existence of an Open Source initiative in this arena, which brings me to the interview linked below from opensource.com. In it, Jason Hibbets of Red Hat interviews Matt Mattox of Axial Exchange, a company that provides an Open Source data interchange appliance and sells services related thereto.

I'll provide a taste from the interview, and leave you to read it (or not) without further commentary on my part. I'm still investigating them so I can't provide an opinion of any sort with respect to Axial, but I do have to say I find their business concept highly intriguing.

When you take a system where suppliers create their own demand--which is what happens when physicians both diagnose and treat illness--and combine it with model where a third party picks up most of the fees, costs can rise quickly.

In terms of the care model, the physician practice and acute care hospital were designed in the early 1900s. Medical knowledge has evolved dramatically since then. Today, there are relatively inexpensive ways to treat conditions that a century ago were understood only by their symptoms. We have an opportunity to re-organize our institutions around the state of the science.

These changes won't happen overnight. The first step is to extract data from locked-down proprietary systems so that health information can be made available to the appropriate people at the appropriate times. Once the data has been freed, we can begin to innovate around new care and payment models. Freeing clinical data is the problem we're working on at Axial.

via opensource.com

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.

Personal Tech: Medical Apps for the iPhone

From NY Times Personal Tech: Medical Apps for the iPhone

After a lot of time reading "best medical apps" stories online, asking Twitter users for their suggestions and reading online reviews, I finally boiled the list down to about 50 promising apps. I tried them out and further winnowed the list to a bunch that I ultimately demo'ed in my talk. Eventually, the video of the talk will be posted at ted.com/talks, but in the meantime, here's what I covered.

(I haven't really given them full-blown testing, so read the online reviews before you spend good money on them. Except for the free ones--you've got nothing to lose!)
--Dave Pogue

I read David Pogue's personal tech blog at the NY Times to keep up on consumer IT trends, but this post from a couple weeks ago seemed really relevant to the readers of FutureHIT. I've been putting off posting because I wanted to say something eloquent, but work and home life have made that impossible. I'll settle for a few hints at what I believe are the most interesting among the items Pogue lists. I'm focused on the ones targeted at health professionals, but the consumer tools have a lot of potential as well.

• OsiriX. "An amazing viewer of medical images (X-rays, scans of all sort)".  I think this is probably just a DICOM viewer, but it requires special server software, so it may be adding some value. Regardless, it's very cool.
• AirStrip OB. "Lets an obstetrician monitor a patient’s status, right down to the baby’s heartbeat, from elsewhere in the hospital (or the town)."  As Pogue points out, this is a good pointer at the types of remote monitoring applications we can expect to see as ubiquitous/pervasive computing moves into the mainstream.

Actually I will mention a thought I've had about one of the consumer apps...

• Retina. "It’s for color-blind people like me. You hold it in front of something—clothes in your closet, for example—and it tells you by name what color you’re seeing."  This is an examplary augmented reality application, intriguing not so much for what it does -- which is of great value, I don't mean to denigrate it -- but for what it portends.  As image analysis becomes more sophisticated, it's easy to picture diagnostic tools that will look at the patient in visible light and infrared and point out diagnostic signs the clinician might overlook. A more prosaic application not yet built but within the reach of current technology would be a program that "looks" at the patient and points out relevant facts and decision guidelines based on the part of the patient's body on which the phone's camera is focused.

I think all this is intimately related to the technology I spotlighted in my recent post on the Open Data Kit, which is aimed at moving advanced tech for the clinician into community settings. As I said in that post, these types of tools will serve the developed world as well as the developing world, because even in the most advanced economies there are segments of the population that are underserved because they can't or won't go to a traditional healthcare provider setting.

There are challenges in all this that take some of the rosy glow out of the picture, notably patient privacy and truth maintenance, i.e. making sure the various information stores relied on by the remote devices have the most up to date information, and can update it as well. In addition there is the very real concern I feel as a patient that healthcare providers may become overly dependent on distributed computing and communications technologies, and be at a loss when connections break down (and they will, oh yes, they will).

Nonetheless, on balance the future for these technologies is bright and getting brighter, and the value they add is potentially enormous.

Open Data Kit

This past week, I read an exciting article on the Open Data Kit (ODK), "Open Source Data Collection in the Developing World", in the October issue of the IEEE Computer magazine. You can download a copy from the University of Washington's Computer Science and Engineering site. To give you an idea what it's all about, I've embedded here a short video from the ODK's project page at Google Code:

The technology is wonderful, but the article got me thinking about something only tangentially related, implied in the story: what constitutes the "developing world"? I've visited people in northern Peru who live on a dollar or two a day, with reasonable quality of life as long as things don't go wrong (which of course they always do, eventually, for each and every one of them). One remote village I visited, La Arena in the region and province of Piura, has been in existence since 1826, and hasn't changed a whole lot in its 183-year history. Their medical care is probably better than it was a century and a half ago, but not by much, and the ODK has promise to make some quantum-leap improvements in that realm.

I began to wonder if the "developing world" isn't much closer to home, though. There are pockets of poverty within two hundred miles of Ann Arbor, in both rural and urban areas, that are similar in some ways to what I saw in La Arena, perhaps not in the level of income but in other factors: the degree of disparity between their economic situation and that of the richest segment of the country's population, for example, and the degree of hope for a better life for one's children.

I can see a lot of ways in which the ODK could improve health care delivery in Michigan's less economically advantaged areas, especially if coupled with a lightweight EMR system like the one marketed by Cielo Medsolutions (disclosure: I consult for Cielo at times, and its principals are friends of mine). Because my involvement in biomedical informatics is in the area of clinical research, I can also see a lot of ways in which ODK could further in situ research in areas such as comparative effectiveness and health disparities. This would be especially effective if the research were conducted through the practice-based research network (PBRN) with which the University of Michigan is affiliated, the Great Lakes Research in Practice Network (GRIN).

If time permits, I will be exploring the ODK further. If I do, I'll report my findings.

BBC NEWS | Virtual health care gets UK trial

You can read about the Aberdeen Royal Infirmary's venture into the brave new world of virtual healthcare in the  BBC News article entitled Virtual health care gets UK trial.Here's a taste:

Cutting edge telemedicine technology, that will allow medical staff to offer "virtual" health care, is being trialled at Aberdeen Royal Infirmary.

HealthPresence, a system developed by Cisco, links up doctors with patients through a video conferencing booth.

Blood pressure, temperature, pulse rate, weight and lung function can be assessed at a distance in the booth if patients can not make appointments.

If the trial is successful, booths may be set up in locations across the UK.

Possible future locations for the mobile health suite could include schools, workplaces, shopping centres and even people's homes.

(picture from BBC news story)

This trial uses kiosks manned by a human attendant; the kiosk can administer simple diagnostic tests, in addition to providing audiovisual teleconferencing. The presence of the human attendant goes a long ways toward allaying my fears about patient data security.

While not exactly a groundbreaking innovative concept, the Aberdeen trial is one of the first uses of rich Internet-based telecommunications media in the mundane world of primary care. I'm excited to see it, especially on behalf of my less well-off rural relatives and friends who currently have limited access to high-quality healthcare.

Now, if we could only get them health insurance coverage... :-)

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.

Weighing the Pros and Cons of Online Medical Records

A week or so ago on the eWeek site, John Pallatto posted an article entitled Weighing the Pros and Cons of Online Medical Records. He comes out in favor of keeping the records in the hospitals and clinics, where (in his opinion) they belong. I believe he's tilting at windmills here.

My question is whether or not Google in particular and the Internet in general can be trusted to safeguard our health records, arguably the most sensitive documents we possess.

But my concerns about Google Health are even more fundamental than that. Companies such as Google, Microsoft and AccessMyRecords.com want to encourage people to put their health records online. People are being asked to do what few people ever had the ability to do before, digitizing their personal health records and storing them in an online database ready for access at any time...

Health care professionals have certainly recommended that people assemble their health records and medical histories in folders or three-ring binders for reference as needed by the patient or emergency medical personnel. People have long had the ability to digitize and store their medical records on their PCs.

But now individuals have to make the same decision that has confronted enterprises when they consider whether to switch to SAAS (software-as-a-service) applications in which their proprietary data about customers, sales, finances or product specifications must leave their own data centers and move into the cloud...

I would ask whether or not the benefits of having personal medical records online in a central repository are worth the time and effort required to get them online. Then I would ask whether the benefits of having those records online are justified by the decision the patient makes to place them in the custody of a third party's data servers.

In that last sentence, I believe John meant it the other way round, whether the decision to put the records online is justified by the benefits. A good question.

As to the time and effort to get the records online, the patient keying in all their own data is about as likely to happen as the patient putting those same records into 3-ring binders or onto their PC - in other words, less likely than being struck by lightning or being involved in an airplane-bicycle collision. But that's not how it's going to work.

Placing Our Trust in Google Health

Google's public unveiling of Google Health yesterday occasioned many commentaries from bloggers. One that resonates with my own concerns is Paul Pallato's post in First Read: Placing Our Trust in Google Health.

Electronic medical records management is the new frontier on the Web. And it's a potentially rich new source of revenue for Google and other companies in the field who are developing similar systems. Consolidating their records online is a complex and difficult task because these are the personal records that are the least organized.

Medical records are always scattered among a multitude of doctors, hospitals, insurance companies and pharmacies. Most of them are still on paper and haven't been converted to digital forms. All of the current custodians of these records are bound by federal law to carefully guard the privacy and integrity of these records. [italics mine]

Herein lies the rub, if there is one. Google Health and Microsoft HealthVault both claim to be exempt from the provisions of the 1996 Health Insurance Portability and Accountability Act (HIPAA). Don't believe it? See Larry Dignan's post yesterday that quoted Google's Terms of Service.

4. Use of Your Information

If you create, transmit, or display health or other information while using Google Health, you may provide only information that you own or have the right to use. When you provide your information through Google Health, you give Google a license to use and distribute it in connection with Google Health and other Google services. However, Google may only use health information you provide as permitted by the Google Health Privacy Policy, your Sharing Authorization, and applicable law. Google is not a “covered entity” under the Health Insurance Portability and Accountability Act of 1996 and the regulations promulgated thereunder (”HIPAA”). As a result, HIPAA does not apply to the transmission of health information by Google to any third party. [some italics added by Larry, more by me]

Hmm... what is a "covered entity"? According to 45 CFR 160.103:

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.