I attended a terrific conference in Boston about a week ago called Health 2.0 meets Ix. Although it is a false dichotomy, the debate is sometimes couched in terms of Electronic Medical Records (EMRs) vs. on-line health care participant communities. The conference organizers orchestrated a bit of show around setting these two models as “opposed,” but conversations amongst the panelists and the audience were more sophisticated than that—which I assume the organizers intended. In fact, the most interesting ideas from conference emerged from the combination of models.
For those who may not be familiar with these two “camps” let me give a very brief overview. Health 2.0 is, at its most basic, the use of the social media aspects of Web 2.0 to help patients and other health care stakeholders form communities that empower them to manage health care delivery while getting the most out of the existing health care system. The most exciting patient communities to date have been organized around patients with rare diseases (like Parkinson’s and Multiple Sclerosis) ) or acute conditions (like diabetes) where treatments are rapidly evolving and social support networks play a critical role in health improvement.
Informatics Therapy (Ix) takes a less grassroots, more “within the system” approach to improving health care delivery. This is how “they” define themselves:
Information Therapy (Ix®) is the timely prescription and availability of evidence-based health information to meet individuals’ specific needs and support sound decision making.
The basis for this approach is the idea that aggregating disparate data, running it through smart clinical rules, and using the resulting analyses will help both patients and their physicians make better health decisions.
After sitting through two days of debates, deep dives, and vendor presentations, here are a few things that made my synapses fire a little faster:
1. 2.0 v. Ix: An audience observation that although Information therapy and Health 2.0 are sometimes treated as though they are mutually exclusive and exhaustive strategies to fix the entire health care system, they are two elements among a much broader set of initiatives (the most ambitious of which is the Health Care X-Prize) emerging to address the needs of the overall health care delivery system. Another participant asked why Health 2.0 approaches shouldn’t be considered another source of data input in the Information Therapy applications.
2. EMRs: The EMR can be effectively used to capture the “background” of the patient — frame the discussion between patient and physician. So the patient doesn’t have to tell their whole life story at the beginning of every provider visit they have. There was even the suggestion to apply the Surgeon General Warning on physicians that don’t use EMRs– that patients put their lives at risk when seeing a doctor that does not have an EMR.
But panelist ePatient Dave spoke incisively during the conference about the accuracy of the information contained in the Electronic Medical Records (EMRs), noting that there are no mechanisms in place to monitor/ensure the quality of the data flowing into Electronic Health Records. All other industries have mature data quality control systems, he argued, that filter, flag, and catch data quality problems.
While this may not be entirely accurate, it is true that other industries are a lot further down the road of managing both the quality and usability of their data. While the move to some form of EMR seems like destiny given the Obama stimulus dollars, the issues around data quality and accuracy, control of entry, portability, interoperability, privacy, etc. remain to be sorted out–and resolving each of these issues will demand the brightest and best thinking. (See an example of interesting thinking and intense disagreement over the contours of EMR implementation at the The Health Care Blog.)
3. Information Therapy — control in the wrong hands?: One Health 2.0 proponent stated that he objected to the Information Therapy approach because he didn’t want a computer programmer to determine his health care treatments. John Halamka, Chief Information Officer of the CareGroup Health System, Chief Information Officer and Dean for Technology at Harvard Medical School (and more), reacted to this criticism by stating that it was the doctors themselves who were defining the clinical rules being programmed. As Halamka writes about in his blogs, the questions implicit here are important, however: Who controls what is considered the “right” clinical rules? How are disputes resolved? What roles should patients or geographic communities play?
4. Paul Wallace made an interesting comparison in his presentation between the historic changes in wealth management to the emerging changes in health management. When wealth management went from a defined benefit to a defined contribution model, the growth of available tools to manage-your-own-portfolio was explosive. Despite this growth in access to products that would allow individual consumers to manage their own portfolios, only a small percentage of people became day traders. Another 25% became more active managers of their 401K. Most, however, continued to completely ignore their 401k. The same forces may be in play in consumer based-health management, he argued. A few people will be very active managers of their own health. An additional group may assume some middle level of management. The majority will continue to ignore the management of their health. Consequently, the solutions will be on the portfolio model—portfolios based on the diversity of patients and on their knowledge/comfort in managing their own health.
This presentation points to the evolving nature of the physicians/patient relationship. Overall, doctors are being used less by patients as the only source of health information, and more as consultants who interpret the overwhelming quantities of information available to patients. Doctors are beginning to play the role of portfolio managers – similar to financial managers. (See Scott Shreve’s model which is something like a portfolio manager model).
Importantly, patients aren’t uniform: their knowledge and their access information exist along a continuum. Some patients still need to be “told” what to do to manage their health. Others show-up to office visits with a stack of articles printed from the Internet. So, empowered health communities on the web—as potent as these are—are not accessible or preferable for all patients, and the solution to the health care morass will have to be broader, more inclusive than this a complete shift to patient-directed care.
5. Again on the doctor-as-consultant idea: Doctors only see patients for a very short time. Even when, or particularly when, a patient has a serious condition (e.g., lung or breast cancer), she may work with specialists who don’t remember her and have to look through her medical chart to remember her situation. The medical professionals who work with a particular patient on a day-to-day basis tend to be other team members, like the chemotherapy staff, who know their patients personally and support them in more personal ways. The idea is underscored here that “I should be the CEO of my body.”
Danny Sands, assistant clinical professor of medicine at Harvard Medical School and senior medical informatics director for Cisco Systems, a member of the panel of doctors, adamantly opposed comments that doctors are only useful as specialists to deliver care. He responded by saying that the suggestion that MDs are best at episodic care cheapens the role MDs should play. They need to partner with the patient and be part of the “team.” (In an interview with Matthew Holt, the language is “knowledge symmetry.”)
6. Problems with/questions about current models: Patients who are actively managing their health sometimes find that the traditional efforts of the managed care companies are not only ineffective but unsophisticated and even patronizing. On the other hand, as one panelist pointed out, many Health 2.0 companies use methods for interaction that can be considered intrusive or aggressive. Most healthy people, and even very unhealthy people, want to interact with the health care system as little as possible.While crowd source data is valuable because it is constantly churning and improving, who manages/ provides quality control for information captured from the “crowd data” on Health 2.0 wikis? The Medpedia approach? Who are the accepted sources? Is there such thing as volume transparency? Is it possible for the average person to wade through the information.
7. A few of the interesting vendors:
UpToDate: UpToDate provides online medical content management. There is a professional peer-review process to get data on topics. Interesting to me was that BOTH patients and doctors have access to the site. Patients get free access to consumer-level information. If patients want to get access to professional content, they pay a subscription fee. Subscriptions are the only source of revenue. Most of the doctors on this particular panel subscribed to and used UpToDate in their offices. The representative from American Well pointed out that the most powerful use of the relevant information from a tool like UpToDate would occur if the information were put in front of physicians during the patient visit. Quality of care could be increased dramatically.
Healia. Healia provides an on-line Question and Answer service for health care questions. They have recently added a group of 67,000 medical students that are answering medical questions for free that are posted on-line.
I look forward to continued active dialogue on these topics — especially as the components of health reform come into focus.
Company. To illustrate the importance of attaching data to specific experiences, they work on a statistic from the film Super Size Me comparing the ratio of McDonald’s advertising budget relative to that of “eat-healthy” campaigns. Ok, good enough, they say, but watch us make a “statistic” meaningful:
I’ve written many times in this blog about how data, presented effectively, can change the way we see problems and think about solutions. I found an exceptional example of this in a lecture given by 
By Dan West 
Health Plans have been agonizingly slow to take advantage of the vast amounts of data available to them. Admittedly, they have some valid excuses. The barriers put in place to protect patient privacy and a lack of consistent data standards makes health data mining a formidable task. However, when I read recently that 
yes and a different perspective almost always result in improved writing. In fact, good editing, or finish work, often requires different tools or skills. A very good editor inevitably breathes new energy into the writing process by solidifying tenuous connections and building out nascent ideas.
Here’s the premise for today’s blog: Technologists tend to overestimate the ability of users to efficiently navigate the tools they create. OK, now let me say that another way: Technologists tend to overemphasize the power of their product, and under-emphasize the usability of their product. Wait–one last time (and this is one of my favorite quotes): 