Liquid data and the health information economy: Is 2011 finally the year? | Opensource.com

Liquid data and the health information economy: Is 2011 finally the year?

Posted 23 May 2011 by 

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What a difference three years makes. It seems quaint now that in the 2008 NEJM there were concerns raised about the flow of health information onto the web. Back then there was but a faint trickle of what could be entered, mostly by hand, and accessed on the web. Before HITECH and health care reform, exchanging health data online seemed blasphemous to many hospitals, patients, and physicians alike.

Fast forward to today and where we are now:

  • Around 75% of physicians have smart phones (the web in their pocket), and will reach 80% in 2012.
  • Major vendors have opened or are preparing to open their APIs in some fashion.
  • Almost every major EHR vendor has or is working on an iPad application (a web tool).
  • HealthVault has already begun to receive info via The Direct Project for the Care360 EHR.
  • Connectivity and interoperability are quasi-law.
  • Web-based EHRs have come to the forefront for many practices.

It’s great progress, and this is an amazing jump from where we were, but it’s far from an economy of health information. The problem is that there is still little patient data to pull from. None of the top 20 iPad health care applications even have connections to EHRs.

If health information is a sort of currency, then what we are seeing is that physicians are beginning to recognize its value. Physicians (and patients, too) are pulling for new functionality and opportunities to use health data, but for the data that really matters, patient data, they’re coming up empty.

What we need to achieve a health information economy

In 2009, in a follow-up to the NEJM article, Mandle and Kohanne (the same authors that wrote the 2008 NEJM paper) describe what they believe is required to develop a robust health information economy:

  1. Liquidity of data (access and exchange)
  2. Substitutability of applications
  3. Open standards
  4. Competition and diversity of applications over functionality, not data.

I like this, and it’s similar to what I’ve found over the years. As a personal mission, I’ve been researching information economies for almost a decade, and it’s clear that there is a repeated pattern in their development:

Information economies must be put into a single system where information can be found, accessed, trusted, exchanged, and then recombined. These elements, together, allow information to flow to where it’s needed in a form where it can be easily acted upon that fits the job to be done (Christensen's cornerstone of value creation and disruptive innovation) at that moment.

Similar to Mandle and Kohanne, my definition begins with what is essentially data liquidity, which happens via access and exchange (but also requires systemic trust). Once we have access and exchange, competition will drive better, more innovative products to deliver information where and when it’s needed.

Why we’re not there

It’s certainly no surpise to anyone reading this that data liquidity is sorely lacking in health care. Too long, competition among those providing and consuming health care information has been driven by restricting access (via data lock-in) to information. It’s the major reason we have big, monolithic EMRs that are poorly designed, confusing, difficult to use, and rarely (if ever) customized to the needs of that doctor and that patient at that time. Without access to data, there is no basis for competition to drive better designed software. You simply can’t compete without the data.

Holding back the power of 2.0 and collaboration

For all the talk of Health 2.0, lack of data liquidity is significantly preventing collaboration. Several companies have built great physician networks, but without any way to exchange the health information that matters: information about real, current cases. These networks have had to rely on reentry of data or, in many cases, limiting content discussions out of fear of HIPAA or FDA violations. So there’s still no way to collaborate effectively around the jobs they have at the moment: treating patients. Successful collaborative tools in medicine simply must:

  • allow physicians to collaborate on actual cases in at trusted environment of peers
  • do so without requiring data reentry
  • have systemic trust (no fear of sharing for security or regulatory reasons)
  • be worked into their current workflow

HIPAA, for better or for worse, has given providers cover for locking in data, and that’s only led to high-friction (not liquid) exchange of data via fax, email, and phone. A combination of fear and mistrust has driven valuable data into places where it has little use beyond where it’s called from: paper charts, monolithic systems, the minds of patients, or within one clinic on the far side of town. In order to gain access, much less exchange information, you have to know what data is available, where it is, and you have to ask for it. So mostly physicians work on their own without relevant data, or worse, recreate it through additonal testing at enormous costs.

Systems that have open exchange, such as Kaiser, even $5 billion of investment in HIT, are reaping rewards. When all providers can compete in an open network of information, they can compete on how they use the information rather than on hoarding information.

Things are changing

Fortunately, meaningful use is providing the incentive for many institutions that previously had none for digitizing and freeing health info, while the Direct Project or others may be a significant step in providing the means for all to exchange health info.

Stage I of Meaningful Use was largely focused on capture and exchange of health data. Stages II and III are focused on using that information in a meaningful way in clinical workflows. While I’m sure that stage II and III will have the desired effects of speeding industry adoption of Meaningful Use of EHRs (even if there’s debate on the directions), but I also wonder how much stages II and III are needed once data is liberated. We’ve seen in many instances before that once data is liberated, it will find its way to where it’s needed.

And that’s the real benefit I see with the Direct Project: it may allow for new companies and new business models for managing health data. Although designed for point-to-point transmissions to replace fax and phone, it may also make data easier to consolidate. Business models for technology companies may arise for making sense of the data, possibly on a population level and personalized level, then delivering it where and when it’s needed.

The floodgates of health information capital may be starting to open--it’ll be interesting to see what forces now pull at the data.

Meanwhile, health care reform may start to reduce the amount of mistrust and fear that exists around health data. If you can’t lose your insurance (the part that both parties like), will you still be as afraid that your health data gets out? Will people feel like it’s just data again, akin to financial statements? It’s still too early to measure the impact, but if PatientsLikeMe is already working, and people are sharing data with drug companies and anyone else who wants to know, then the potential that will exist when people are no longer fearful of losing insurance will be even greater. Trust is easier when what you share can’t be used against you.

Where are we headed?

To get to a true health information economy, health info has to travel from its vast untapped repositories to where it’s needed. Once it’s liberated, data will flow to help patients and physicians make better choices and continue learning while technologists use that data to provide better solutions.

In The Power of Pull, John Hagel III, John Seely Brown and Lang Davison at Deloiitte’s Center for the Edge describe how access, trust, and collaboration enabled through Web 2.0 are quickly accelerating advances in many companies and in many fields. The first step is access. Through access come the connection, exchange, and trust that drive the emergence of higher order innovations. One of the key points highlighted by the Power of Pull authors and others is that sharing information drives Pull. Pull in a connected world lets solutions find you. Once physicians and patients can exchange health information in a meaningful way online, they will. The benefits in outcomes are just too big to ignore.

Of course, in true counterintuitive fashion, health data will have a chance to experience the Power of Pull, but enabled via Push technologies in the Direct Project, but it’s a big step forward.

PatientsLikeMe is a prime example. Sharing becomes a small price to pay for better decision-making ability. Even though PatientsLikeMe is very openly funded by pharma, patients share openly. Part of that is the sense of community, but more of it is surprisingly and refreshingly data-centric. People share because they want results. They recognize they can increase the knowledge researchers, physicians, and fellow patients have of disease. Data liquidity will make it even more so, and better outcomes will result. It’s like an investment and spending of currency in a thriving economy. You spend it because you trust that you or someone you love will get more in return.

Better outcomes find us when we can find better information to make decisions without managing that information. That, in essence, is what a true health information economy will look like. I have high hopes that we’ll remember 2011, through health care reform, meaningful use and new chances for interoperability, as the year that health data became truly liquid.


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This article was originally posted on HL7 Standards Health blog, engaging conversations on healthcare and technology

 

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4 Comments

Peter Vescuso

You make many important points about what’s needed for a robust health information economy. As you point out healthcare is complex – and I would add costly – due to the closed nature of healthcare software. An active open source software community for healthcare would address some of the issues you raise and accelerate the removal of many of the barriers you identified.
Today, according to data Black Duck collects on all open source projects available on the Internet, there are over 1,500 open source software projects specifically for healthcare. These projects cover a wide range of applications but there is a concentration of projects for electronic medical records, medical imaging, clinical trials, and remote/mobile access. Collaboration is happening and growing in these projects and the communities around them. The issue of open APIs is mitigated, although not likely eliminated, if open source software is used more pervasively. And there are some projects providing open access and exchange of data such as OpenTrials ( http://reddes.bvsaude.org/projects/clinical-trials/wiki/OpenTrials ) from Brazil. OpenTrials is a multilingual clinical trials registration platform. It exports records compatible with the International Clinical Trials Registration Platform of the World Health Organization (ICTRP/WHO).
And there’s at least one organizations -- Open Health Tools (http://www.openhealthtools.org/ ) of which Black Duck is a member -- embracing the community and open source approach to transform health information technologies (health IT).
Peter Vescuso, Black Duck Software

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leonardkish
Open Minded

Peter,

Thanks for the response and the links. I really like the things happening in Brazil and I travel there regularly. I agree that an active open source community would resolve many of these problems, and the community needs access to data on which to build and access to the point of care to deliver. Now that data and access may be opening up, I hope that we'll see the community follow. At the Clinical Groupware Collaborative (www.clinicalgroupwarecollaborative.org) , we have several initiatives ongoing that may improve the development of robust open source communities around more open platforms for health IT. Would welcome the opportunity to exchange ideas moving these communities forward.
@leonardkish
@CGCollaborative
LinkedIn Group: http://www.linkedin.com/groups/Clinical-Groupware-Collaborative-3883682?...

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dsbrooks
Open Enthusiast

Leonard,

I enjoyed your article very much. I think you provide a very good overview of some of the many challenges of making health information liquid. As much as I agree with your sentiment that 2011 should see health information become truly liquid, I sadly feel that we are still years away.

As you are no doubt aware, freedom of health information has almost nothing to do with technology. Like so many other things in our lives, limitations are dictated by special interest groups, politics, and ultimately money.

Some things are definitely changing for the better: as you pointed out, many key system vendors (both inpatient and outpatient focused) are beginning to support open-platforms... this after years of tenaciously locking that information down to control market-share, and create barriers to new entrants (and innovation). I definitely believe this open-platform trend is being driven by larger forces, typically associated with healthcare reform (and HITECH dollars).

Other things remain the same: consumers (i.e. patients) demand more efficiency, more transparency, better access, you name it... while simultaneously demanding tighter security. While greater liquidity with tighter controls should be everyone's goal, in practicality, it is difficult. In fact, the sharpening of HIPAA and HITECH privacy/security teeth is probably the single greatest inhibitor of information flow. But let's not stop there.

I think a prevalent assumption by consumers (and IT folk as well) is that physicians welcome access to more information. After all, with more information, clinicians can make better, more-informed decisions, right? This is true if you completely remove reality from the picture. Physicians are already overwhelmed with the information they do have. Furthermore, anyone who has seen a doctor in the last 20 years knows that anything in excess of 5 minutes of face-time is unusual. There are ever-more time commitments, as well as financial implications that drive physicians to spend fewer and fewer minutes with their patients. Requiring a physician to track-down more information, and then assimilate it is perhaps too much to ask or expect. Throw liability into the mix and it's a non-starter. "Dr. X, if you had taken the time to query your health information exchange (HIE) portal, you would have known that Dr. Y prescribed such and such treatment. Your failure to perform due diligence has caused irrevocable pain and suffering to my client." In the current climate, I would find it very difficult to fault a physician for such "negligent oversight."

From a technical perspective, HIEs and NHIN help provide necessary middleware to make more use of information stored in disparate databases. Current use-cases require clinicians to pull this information (e.g., make calls through the architecture to various end-points that might house relevant information). In terms of usability, we need to move from a pull-based solution to a push-based one - where clinical providers automatically receive information on their patients whenever new information becomes available, any time, anywhere.

Nevertheless, the bigger issue - in my humble opinion - is to continue to transform the role consumers (patients) play in the healthcare ecosystem. First and foremost, this involves making patients more directly responsible for the cost of their healthcare (I intended to insert a link to the just released study of healthcare costs by the California Healthcare Foundation - CHCF; alas, their website is down at the moment). This is happening... and probably has a lot to do with various favorable trends occurring throughout healthcare.

Smarter, more-fiscally conscious consumers make smarter decisions. They seek out providers who take the time to review their information fully before a visit ... and they pay more for higher quality. Smarter consumers also reward organizations that invest in technology, infrastructure, progressiveness, and ultimately better clinical outcomes. They become a lot more rationale when it comes to things like data security. For instance, if I want companies to take all my information and run data-mining algorithms to predict my risks for various illnesses, maybe I need to find a way to collect and share my information.

At the end of the day, the thing that's going to make this all happen is a liquid, consumer-driven market. Consumers who demand excellence and innovation from their suppliers (providers and technology vendors alike), and are willing to back it up with money get what they want. Instead, we have a market where consumers are uncompromising in their demand of everything. They typically have a sense of entitlement inversely proportional to their contribution to overall costs (and directly proportional to their utilization of healthcare resources). They take responsibility for nothing. They are willing to pay for nothing (generally speaking of course), because they have entrusted private payers and the government with their purchasing power. The government has no clue how to manage this responsibility, and private payers care far less about the perceptions of their customers than their profit margin.

I apologize if I sound overly cynical. The truth is, I am not. I actually believe that we are on the verge of a complete transformation. Bankrupt Medicare and Medicaid systems, skyrocketing health insurance premiums, and the iPhone are all turning the tide. As consumers get larger healthcare bills, they're going to increasingly ask the right questions: how can Netflix give me so much for so little? why is the iPhone just the coolest thing ever... and now the iPad?! These companies didn't just happen. Genius, or not, they represent the cream of the crop. For every one of them, there are thousands that didn't survive. And who decided? We did. We made Netflix and we made the iPhone. Isn't it time we directed our attention to something a little more important than Angry Birds?

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Leonard Kish

David,

Thanks for the thoughtful comments. I think you're right that the consumer will ultimately drive the transformation. It starts with data. Once everyone has their data, ala the VA's Blue Button http://www.va.gov/bluebutton/ , the rest may indeed follow. If you look at the growing quantified self movement, http://quantifiedself.com/ , you get a sense that people are starting to see the power of data and analytics around health. I also agree that docs don't want to manage that data, nor are theythe best ones suited to do so, but really, they will have to become better enablers of the use of technology and data in their practices or those that see the power will find new doctors. We'll also see more of the "gamification" of health via apps, as well as docs prescribing apps, which Practice Fusion has now begun to allow. Managing data will become a part of the patient's role, but now they'll have apps and be more empowered to do so, so I foresee much more than Angry Birds to come. Still it starts with the data, and I think, eventually, a health web that will be a web suited toward the management of health much like this vision of a social web is suited toward managing social connections: http://www.w3.org/2005/Incubator/socialweb/XGR-socialweb-20101206/

The economics of this sort of infrastructure just make too much sense for it not too happen. There are vested interests that may wish to halt it, but so far, they're a little late for this train.

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Leonard Kish is an independent strategy consultant working with health care technology companies in areas that span business model design, social media strategy, collaboration, analytics, standards development and user experience design. He is chair of the Marketing and Communications Group for the Clinical Groupware Collaborative and has served as Vice President of Operations at Capitis Healthcare International as well as executive positions with several startups. He holds the degrees of

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