My meeting experience using Cisco’s TelePresence technology brought new meaning to the phrase “just like being there.” I had a lively conversation with some of the UK’s leading information prescribing advocates this morning (or this afternoon if you were sitting on the other side of the table in England).

Two of the participants were from Cisco’s Internet Business Solutions unit — Kevin Dean from the UK side and Danny Sands (who also sits on the IxCenter Board of Directors) — normally in Boston but was down in DC today. Also on the other side of what truly felt like one oval table were John Cain from the UK Department of Health — who has headed up a lot of their patient empowerment work — and Mark Duman, President of the Patient Information Forum.

As I’ve described before, the UK government is way ahead of the US in this area, having already written into their National Health Service Constitution a guaranteed right to information in advance of any treatment. The UK government has taken a leadership role in advancing information prescribing throughout the country.

What I did learn more about today is that converting such good intentions into Ix that is embedded into standard care delivery is still a work in progress. The UK Department of Health currently funds the information prescribing activities, but the National Health Service (NHS) has not yet been able to embed Ix into the care delivery process of NHS providers. The result is that much of the Ix transpiring in the UK is actually from the UK government directly to the people. It’s more of the over-the-counter Ix model.

The UK Department of Health has several Ix initiatives in the works. They are developing tools to make information prescribing easier to use in normal practice settings. They are developing information standards and accreditation processes. They also figuring out how to embed patient experience into the design of Ix services. And, more regionally, other efforts are advancing Ix, such as Scotland’s national health information service that has citizen advice bureaus staffed by health navigators to guide consumers to needed, personalized information.

I shared with my friends across the pond some of the critical opportunities to advance information prescribing now in the US. The IxCenter continues to work closely with several agencies within the U.S. Department of Health & Human Services (HHS) on the development of an information prescribing objective for Healthy People 2020. In addition, legislation to require patient decision aids, a consumer view of “meaningful use” of HIT, more emphasis on consumer needs in the roll-out of comparative effectiveness research, and other legislation could go a long way toward embedding expectations of Ix into everyday care delivery. I also described the IxCenter’s work around advancing more robust models for evaluating the quality of health information.

Our small group had far more to discuss than time available. We’ve agreed to continue our cross-national conversations on information prescribing best practices and strategies for infrastructure development. Hopefully, we’ll continue to learn a lot from our international dialog and truly embed information prescribing into care delivery processes.

Two pieces in the health blogosphere caught my attention as being connected even though they were ostensibly about different topics. The first, by Tom Lee (the California Dr. Tom Lee, not the Boston one), appeared yesterday on the California Healthcare Foundation’s iHealthBeat site (actually not officially in the “blogosphere” because it’s a “Perspectives” piece rather than a blog post): “Is It a Matter of Time Before Physicians Are Replaced by Expert Online Medical Content?” The other is a collection of insightful thoughts on the definition of “participatory medicine” triggered by Gilles Frydman on the e-patient.net blog.

Lee makes several interesting points, emphasizing the corollaries in content commodification between the newspaper and health care industries. Not only do I see corollaries myself, but I described these in considerable detail in opening the 2008 Information Therapy (Ix) Conference at the Newseum — a building with a 74-foot engraving of the First Amendment on its facade facing Pennsylvania Avenue between the Capitol and the White House. We held that conference there quite deliberately, in order to explore how Ix and free access to information will play a role in shaping a truly American redesigned health care delivery system.

In framing last year’s conference (slides here), I explored the history of the uniquely American approach to information democratization. Not only was the idea of a free and critical press revolutionary when the founders wrote the Constitution, the US also was the first country to mandate the use of statistics (via the census) and use those data in the organization of democratic government. In other words, information democratization and data science were paired together from this country’s birth.

The proliferation of the mass media was just one of many manifestations of the US’s historical preoccupation with information democratization. Other US innovations relative to the other fledgling democracies include public legislative sessions, concisely written & widely published federal & state constitutions, and comprehensive postal network & assured postal privacy. Just think of the “2.0″ role of 18th-century colonial newspapers that went beyond just publishing then-radical documents like the Declaration of Independence. Those newspapers not only played a critical role in reporting protests and championing the cause but providing a forum for discussion. As Paul Starr (also author of the the Pulitzer Prize-winning Social Transformation of American Medicine) pointed out in The Creation of the Media, the public input turned disorder into a more coherent opposition movement.

What I went on to say, though, was that information democratization was not only a great American opportunity but Starr also described its perils and potential dangers. The key is harnessing that power, and the key for health care is to marry it with the best that science has to offer. By layering evidence-based medicine, behavior change science, decision sciences, predictive modeling, comparative effectiveness research and other technologies onto information democratization, we can fully tap its potential in a productive way.

This is where the connection between Lee and Frydman comes in. Lee describes “at least three brakes or limitations to the forces of commodification.”

1. Not all content is created equal
2. Some content is best experienced in conjunction with a physical experience
3. Content commodification ultimately will be driven by the economics of the content business.

I think that there is much more to it than that, most critically that the value that the clinician can provide often is much less about content than about context and communication. Participatory medicine transpires where good content gets contextualized for the specific needs of a particular patient/consumer and effective communication helps to facilitate an interactive dialog. That interaction should support one or more of the following: informed/shared decision making; effective behavior change or support; and/or coping or practical support.

e-Patient Dave made an important point on the e-patients.net blog yesterday, “The I in IT stands for Information.” It’s a good reminder, as is the first comment to his post that, “Data is only information if you can use it.”

We’ve been trying to drive home both these points for a long time, such as in the 2005 California HealthCare Foundation Issue Brief, “Lost in Translation: Consumer Health Information in an Interoperable World.” From the overview:

Each day, more people seek information from online sources than from their own physician. But availability of information does not necessarily translate into understanding or taking appropriate actions. While momentum builds for a National Health Information Network infrastructure, it remains unclear what role patients will play in the interconnected world of providers.

As clinical information becomes more directly available to consumers through the Internet or through other electronic communications from providers, a mechanism for meaningful, consistent translation to engage consumers is lagging. For example, a diabetic patient accessing his personal health record may find that a recent hemoglobin A1c test is 10% but what does the patient do with this information? Are there ways to help patients understand the data — and the actions they should take — without having to schedule a visit with a provider? Are there ways of ensuring that an Internet search could supply patients with meaningful information?

This 2005 report examines consumer-based information and what could be done to better integrate consumer health information standards into the NHIN framework.

This also brings us back to the fervent discussion that has brought up important insights earlier in the week on the e-patient blog as well as some on The Health Care Blog (in response to the “Health 2.0 Meets Ix” speaker posts on “Building Health 2.0 into the Delivery System”) and additional points I’ve addressed here.

What is critically important is never to think information therapy (Ix) is just about the information, let alone just about the data. There is a building process at work in Ix that begins with data, evolves to information, gradually builds into knowledge, ultimately driving behavior. Ix advocates make no argument that the data-information-knowledge-behavior sequence is automatic.

Quite the contrary. We are fervent believers that good information itself is only one ingredient in effective decision making or behavior change. In fact, some of our most active IxAction Alliance members have developed entire bodies of work on how to do that, such as the transtheoretical model of behavior change or the science of shared decision making.

We also recognize that, as the famous marathoner-cardiologist-philosopher George Sheehan once said, “Each of us is an experiment of one…” While I vouch for his comment in terms of its original target (marathon training), I think it has much broader applications as we think about the diverse needs of the population in terms of how people learn, use information, make decisions, and behave.

Two online discussions forced me to return to a question that I have wrestled with for the last nine years that I have been working on information therapy (the first year-plus of that was myself referring to it as “information prescribing”): Is the term “information therapy” helping or hurting the mission and vision of the Center for Information Therapy?

The first discussion that I referenced yesterday was on the e-patients blog and the second is the proposed Healthy People 2020 objective (”Ensure that each encounter with the delivery system is accompanied by prescribed information that supports an individual’s personal health needs”).

We have struggled over the entire decade with semantic issues, as have many others with similar values and goals. For example, in collaboration with IxAction Alliance member, the Foundation for Informed Medical Decision Making (FIMDM), Karen Sepucha, PhD, and I published the white paper in 2008 titled, “Navigating a Changing Health Care System: How Consumers, Clinicians and Policymakers Can Make Sense of Shared Decision Making and Information Therapy.” The impetus for the paper came from the cringe that FIMDM and IxCenter supporters occasionally witnessed when we used variations of SDM and Ix in conversations with consumers, clinicians, policymakers, and others.

Initially, we used “information therapy” and its shorthand “Ix” because we wanted to drive home the point: Information can be powerful medicine! While we have always supported the full democratization of information, we also recognized that the vastness of the World Wide Web was not serving all consumers in all circumstances. Susannah Fox from the Pew Internet Project has described how their data indicate that consumers want information, counseling and support from professionals more so in health care than the other industries Pew studies. Susannah has also found through focus groups that consumers who are told by their physicians to stop going online do one of two things: switch doctors or “go underground.” The former may ultimately drive the change we need, but the latter is not good for care delivery; it is the antithesis of the movement toward “participatory medicine” that many of us believe is critical to reform of the delivery system.

Moreover, as I described in “Information Overdose and Other Ix-Rx Corollaries,” too much information can sometimes produce an information overdose and inaccurate information can create negative side effects. Part of what we need to do is figure out how to create efficient systems that proactively deliver information targeted to a person’s particular moment in care and tailored to their individual needs and circumstances.

It’s not easy. But we see great signs of progress, where a variety of health care organizations have created increasingly refined methods for mining data sources that can be viewed as “information triggers.” These data points — and the best ones are often those that derive from the consumer him/herself but can also come from EHRs, lab values, pharmacy data, etc. — tell us something specific about what information a particular person needs at a specific time to make a better health decision to effect a certain health behavior.

Just like much in life, information therapy is on a continuum. Some Ix is very simple — flu shot reminders (with an explanation of why it’s important) delivered every autumn to high-risk individuals — while others require much more sophisticated systems, such as Group Health Cooperative’s integration of a health risk assessment into a full-scale clinical information system to prescribe personalized Ix.

We’ll keep on working on it until it becomes an expected part of care delivery. Until then, we’ll still look forward to a healthy debate on what we should call it.

Over at the e-patients blog, John Grohol has some criticisms of information therapy (Ix) and Health 2.0, particularly with respect to the joint post that I did with Matthew Holt and Indu Subaiya last week on this blog, The Health Care Blog, and the Health Affairs Blog. Grohol seems concerned that broadening the definition of Ix and Health 2.0 render them less meaningful.

It’s a fair criticism in many ways. In fact, that is why the Center for Information Therapy (IxCenter) and its IxAction Alliance have invested so much energy in developing formal definitions, which have been adopted by URAC for their disease management standards and integrated into the National Business Coalition on Health eValue8 purchaser RFI for health plans.

Moreover, that definition forms the core of the new proposed information prescription objective that has been proposed for HHS’s Healthy People 2020 objectives, which I discussed last week and on which you can voice your own opinions.

That said, there are reasons to be broader in some circumstances as well. Earlier semantic criticisms of Ix included a concern that the IxCenter was suggesting that information should be available “by prescription only.” We needed to make clear that nothing could be further from our goals and that we fully supported “over the counter” availability of information. (It’s worth noting that even though this was the general consensus of the IxCenter Board of Directors, its founding Chairman Don Kemper probably agrees more with the stricter definition than the revised one.)

However, information therapy has always included the three types of information prescriptions — clinician-prescribed, system-triggered, and consumer-prescribed — as was made clear in the Ix book published in 2002. The question is what constitutes consumer-prescribed Ix. Most certainly, it has always allowed for a prescription by a lay person who knows you best (e.g., spouse, friend) and someone in your peer group (e.g., a person with more experience with the same condition). The “self-prescribed” is where we have more controversy.

But the most important thing that separates Ix from “plain old” information is that it is targeted to a moment in care and tailored to someone’s individual needs. The question is: What is the best way to find that? The answer, I believe, depends greatly on the individual in need of the Ix. And that is why we try to be inclusive in our definition.

The Center for Information Therapy has been working with the HHS Office of Disease Prevention & Health Promotion to help create more robust e-health and health communication objectives for Healthy People 2020 (see related post for background). There is considerable interest now in the development of a new objective related to information prescribing.

The public input is critically important to advancing these objectives, so please voice your own opinion on the proposed new information prescribing objective. All you need to do is go here, log in, click on the “Discussions” tab on the left nav bar, and click on the “Information therapy and related issues” thread.

Here’s the substance of the argument:

Proposed New Healthy People 2020 Objective

Ensure that each encounter with the delivery system is accompanied by prescribed information that supports an individual’s personalized health needs. 

 Various operational definitions of prescribed health guidance are practical. In order to ensure that the definition incorporates a wide array of strategies, media, and tools to meet the diverse needs of the U.S. population, it is important that the definition balances specificity of purpose with flexibility for varying approaches.

One multi-stakeholder coalition of information prescribing experts developed the following definition, which has subsequently been adopted by various non-profit oversight entities (see “Justification” section).

To be classified as information therapy, information should meet each of the following requirements:

·         Be targeted to one or more of the individual’s current moments in care.

·         Be proactively provided/prescribed to the individual.

·         Support one or more of the following:

o   Informed decision making, and/or

o   Skill building and motivation for effective self-care and healthy behaviors related to the moment in care, and/or

o   Patient comfort/acceptance.

·         Be tailored to an individual’s specific needs and/or characteristics, including their health literacy and numeracy levels.

·         Be accurate, comprehensive, and easy to use.

  Justification for New Objective

Research demonstrates that 40% to 80% of all information communicated orally by a physician during an in-person clinical encounter is forgotten by the patient by the time he or she returns home. Ample peer-reviewed literature exists to support the impact of information prescribing and much of it is summarized in the white paper, “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm.” In addition, the Center for Information Therapy has many additional references available.

Some independent, non-profit, private sector oversight groups have begun to build information prescriptions into their expectations for care management.

·         The accreditation organization, URAC, announced in August 2008 that organizations seeking disease management accreditation would be subject to “information therapy” standards.

·         The National Business Coalition on Health (NBCH) revised its eValue8 common RFI for health plans to expand its consumer engagement criteria to include information therapy components.

 Potential Data Source

1) Current assessment of information prescribing relies on structural measures of information prescribing:

a.    URAC began collecting data in 2009 on information prescribing, according to detailed specifications of what constitutes an information therapy intervention.

b.    NBCH will collect data from hundreds of health plans in 2009 (using similar specifications) about their provision of information therapy to their members in order to facilitate better consumer engagement.

2)    Significant interest exists among varied parties in stimulating the development of performance measures that assess information prescribing and related outcomes of it.

a.    The independent, not-for-profit, Center for Information Therapy is exploring measure development in this area.

b.    The National Quality Forum and the associated National Priorities Partnership has identified patient-centered measurement as a critical priority. This work may build on measures of patient activation, behavior change, decision quality, and consumer engagement.

Bristish IxAction Alliance member, the Patient Information Forum (PiF), has just released a report, “Information: First Line Therapy?” (overview available here). Among PiF’s main conclusions:

1. Whenever possible, information should be the first therapy prescribed.
2. Information therapy (Ix) needs to be personalized and targeted to the “correct stage of the patient journey.”
3. Because of the vast information available and that the fact that much of it is “incorrect or misleading…there is a definite need for a more stringent monitoring system, condensing information and/or signposting information to direct professionals and patients to the most suitable resource.” They’re not sure how to operationalize this recommendation.

Based on these findings, PiF has identified a series of next steps — some of which are:

1. PiF wants to develop a bigger research base in three areas: a) “how information can be integrated into routine theerapuetic management;” b) “measure the impact of health information;” and c) assess the current state of “health information provision.”
2. PiF plans to become a more forceful public policy advocate in this arena in the UK.
3. PiF recognizes that it needs to “find ways to help the consumer health information workforce develop in their roles, increase their skills and share their knowledge and experiences more widely and effectively.”

The Center for Information Therapy (IxCenter) has answered some of the research questions in our white papers.

• “The Mysterious Maze of the World Wide Web: What Makes Internet Health Information High Quality?” evaluates the quality of diabetes content on the Web and — based on empirical research and scientifically validated tool development — provides a series of policy and operational recommendations for advancing more robust measurement of information quality.
• “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm” synthesizes the empirical evidence in support of Ix interventions and organizes them around the Institute of Medicine’s 10 health care delivery redesign recommendations from its “Crossing the Quality Chasm” report.

The IxCenter also has conducted other relevant research to answer these questions that fall into two categories (both of which are accessible to IxAction Alliance members through our member portal):

1. Ongoing review of the peer-reviewed literature. Through our bimonthly IxResearch Briefings, we have added about 40 more studies to the original “Ix Evidence Base” white paper, each of which describes implications for implementation of initiatives focused on proactive and targeted delivery of information to consumers/patients.
2. We have also collected more than 40 IxInsights reports and associated archived webinars on a wide array of innovations or best practices in the field. Although many of these interventions were implemented without a prospective study design, they still offer critical learnings about the best Ix implementation strategies.

As I have alluded to before, Ix Pioneer Sponsor Group Health Cooperative has provided a seed grant to help us develop a database that rigorously and methodically integrates these two types of evidence. By doing so, we will be able to answer the questions posed by PiF (and others) more robustly.

Happy New Year!

So much excitement is on the horizon in the new year. Here are five IxCenter priorities for 2009:

• The intersection of information therapy (Ix) and Health 2.0
  • There has never been a conference like the upcoming first-ever “Health 2.0 Meets Ix” Conference in Boston April 22-23!
• More intensive efforts in Ix implementation in safety-net populations
  • New IxAction safety-net providers as well as a few potential new Ix grant projects with underserved populations have great potential to show the reach of Ix initiatives.
• Building the Ix infrastructure in the context of health care reform
  • How do we build on 2008’s Ix private sector infrastructure successes by developing Ix-oriented performance measures and integrating these efforts into the national health care reform debate?
• More detailed exploration of Ix strategies for Rx management
  • What is the role of Ix in improving medication management, reducing medication errors, and streamlining medication selection decisions?
• Deep dives on key Ix applications
  • These may include pre-visit prep, after-visit summaries, prevention reminders, decision aids, and others.

What matters most to you as we work to advance the practice and science of information therapy in 2009?

Yesterday’s New York Times published a series of articles of health information searching on the Web. Among the many interesting quotes, one that resonated with me was in this article from Dr. Michael Fisch, interim chairman of general oncology for the University of Texas M. D. Anderson Cancer Center.

Dr. Fisch expressed concern about information overload. He commented, “Just like with medicine, you have to ask yourself what dose you can take. For some people, more information makes them wackier, while others get more relaxed and feel more empowered.”

I would never use the term “wackier,” but there no doubt are some consumers who suffer from what I call “information overdose” while others fully embrace the democratization of information.

Other corollaries between medication prescribing (Rx)  and information prescribing (Ix) exist as well. Despite the tremendous value that good medications or good information can provide for patients in need, wrong or inaccurate information can produce negative “side effects.”

In fact, one of the goals of Ix or information therapy is to proactively deliver the appropriate dose, frequency, and duration of the information that an individual needs at just the right time to make a better decision or lead a healthier life. If deployed correctly, new technologies can facilitate information prescribing targeted to paritcular moments in care and tailored to people’s individual needs.

We always want to maintain the availability of “over-the-counter” Ix. In no way, should information be available “by prescription only.” But availability of information does not necessarily translate into access to usable, meaningful, understandable information.

When Healthy People 2000 was dreamed up two decades ago, the World Wide Web was not much more than a figment of someone’s imagination. When Healthy People 2010 was issued 10 years later, the Web had become a powerful avenue for democratizing access to health information. How can we possibly anticipate what the Internet will mean when we try to evaluate the nation’s health in 2020?

That’s the start of my post on the blog that is serving as an important input for the development of the Healthy People 2020 objectives for e-health and health communication. In addition to this post, I’ll be monitoring the input to HHS on this topic for the next two weeks, so come join the conversation over there.