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.

Even though 2010 is still several months away, the U.S. Department of Health & Human Services has been hard at work for more than a year and a half in developing objectives for Healthy People 2020 (in fact, I wrote about some of my involvement with this effort as far back as October 2007, and in more detail in May and July of last year, here, here and here). In particular, there are significant efforts to improve e-health and health communication (including information therapy (Ix) and patient-centered health information technology (HIT) focus) by HHS’s Office of Disease Prevention & Health Promotion (ODPHP), Office of the National Coordinator (ONC) for HIT, and the Centers for Disease Control & Prevention (CDC).

HHS has developed some Web 2.0 approaches to revising existing Healthy People objectives and developing new ones. You can now join the discussion by going to a Web site that has dozens of threads going on e-health and health communication objectives.

For example, in this thread, I’ve advocated for the need to drive toward much better clinical decision support for consumers:

“I would argue that consumer decision support is a greater priority due to both its critical role in chronic care management, disease prevention & health promotion (see a recent Archives of Internal Medicine study described here for example of research demonstrating greater importance of engaging consumers than clinicians) and because it’s been a lower priority historically.  I could suggest some ways of operationalizing it if anyone’s interested.“

With regard to a thread on one of the existing objectives (11.4) from Healthy People 2010, “Increase the proportion of health-related Web sites that disclose information that can be used to assess the quality of the site,” I based my comment on my own research on health information quality (see “Mysterious Maze of the World Wide Web: What Makes Health Information High Quality?” white paper):

“Create a more meaningful and more robust approach to measurement of information quality to include (in addition to structural assessment of information quality): measurement of accuracy & comprehensiveness of health content; and user assessments of the utility and functionality of the content.” 

I will be offering additional input through this discussion board this week related to the ONC federal HIT strategic plan, CDC priorities, and other issues that affect how HIT is used to promote better health, and I encourage everyone else to do the same. Whatever you think is important in terms of national priorities for e-health & health communication, this is a great opportunity to make your voice heard.

I’m looking forward to attending the apparently sold-out Health 2.0 conference next week in San Francisco. I’ll be moderating a session on Content, Navigation and Advocacy (see day 1 of agenda here) with a great collection of panelists and demo presenters.

As my increasing blogging about Health 2.0 suggests, the IxCenter is increasingly interested in the intersection of the Ix and Health 2.0 movements, and all those in attendance next week will be the first to learn about a really exciting development along these lines.

Many of the questions ruminating through my head as I think about what will be discussed next week include:

• How can the evolving delivery system retain the best of Health 0.0 and 1.0 (e.g., trust and personal relationships) on the route to Health 2.0 (with much greater user-focused functionality)?
• To what extent are Ix and Health 2.0 synergistic vs. dichotomous? More importantly, what are the keys to maximizing those synergies?
• How do you actually build Health 2.0 into existing care delivery systems?
• What are the pros and cons of the “expert” vs. “wiki”approaches to knowledge creation in health care?
• What’s the future role of the doctor? Is it true to its Latin roots (literally, “to teach”)? Is the physician role a navigator, a contextualizer, a consultant, or something else?
• To what extent will human vs. automated infomediaries guide consumer decision making and navigation in the future?

Tune back here next week and also to the IxCenter home page for new and exciting Ix-Health 2.0 news!

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.

The new Informed Patient Institute has launched a beta site for guiding consumers to the best resources for selecting high-quality providers. The beta site focuses on nursing home rating tools and they plan to next tackle physician ratings.

IPI’s Executive Director, Carol Cronin, has been a national leader in guiding consumers to high-quality care for much of the last decade and a half (or perhaps more), and you can see just from this beta site that it holds great promise for helping consumers navigate the really messy terrain of provider rating systems. It is systematic, user-friendly, and well-designed.

Of course, since it is so badly needed for all kinds of providers, I’m only concerned that the other provider evaluative guidance can’t get here soon enough. I’m eagerly looking forward to the roll-out of the physicians guide and those that follow.

I came back from two weeks away in August to find a flurry of new data (here and here, for example) about how consumers are using the Internet for health care information searching. There also is more discussion in the ongoing debate about giving consumers access to information to make health care purchasing decisions, highlighted in the last few days by a proposal (not yet enacted, as best I can tell) from Alaska Governor Sarah Palin to set up a state-run health care information office for this purpose.

As explained by Center for the Advancement of Health President Jessie Gruman more eloquently than I ever could, the health care information tools just aren’t sophisticated enough yet to make this model work effectively. As suggested by the essay’s title, “So Many Choices, So Little Information!” consumers’ information demands are not being met.

It may not quite be a supply-and-demand problem given that it often is not a case of too “little information.” In fact, many health information seekers experience an “information overdose.” In many cases, it’s just not the right information–whether it be inaccurate or not comprehensive (such as what I summarized years ago in a white paper based on my own dissertation research), or it lacks specificity to the consumers’ actual needs.

Ultimately, the test for any information is whether it:

1. Answers a consumer’s question directly, accurately, and comprehensively
2. Provides that answer in a way the consumer can understand
3. Can be remembered or internalized at least for the purposes of the immediate need
4. Have sufficient resonance to guide decision making, stimulate sustained behavior, and/or provide comfort/support to the individual in need
5. Be contextualized for that individual’s particular circumstances

No doubt that’s a tall order for any information. That’s why even with the increasing sophistication of technology and information tools, we’re probably going to be more successful if we can integrate the best information we can find into the care delivery process.

I had a fun meeting yesterday with some smart folks from the Robert Wood Johnson Foundation that brought up some questions about Ix that could use some clarification. When we talk about information therapy (Ix), we often drift into “evidence-based information” to help with some specific health condition.

That certainly is an important component of Ix, but it’s too limiting in many circumstances. When we talk about the “proactive delivery of the right information to the right person at the right time,” that has to encompass whatever the information needs of the consumer are.

What we know from talking with consumers–and from a variety of other research and projects–is that people have health- and health care-related information needs about so many things that have nothing to do with the best evidence-based health information.

• How do I find out if this procedure is covered by my insurance?
• Who should I go see for this condition?
• How do I get there?
• What can people who have had this condition tell me about what it’s like to live with it?

The list of questions is virtually endless. The point is that information therapy refers to getting good information to people for whatever the consumer needs for his or her well-being and health/health care-related decision making.

This became clear in the Medicare Health Support project designed to support the chronic care needs of the frail elderly with multiple conditions. It turned out that a majority of their needs were not clinical. They needed help getting transported to their appointments, filling medication prescriptions, getting meals prepared for them, and generally alleviating a great deal of social isolation. They still had great information needs, but they needed to be tied to other resources.

In this context, it is no less important that the Ix consists of “good information,” but it does mean that “evidence-based” is sometimes too limiting a criterion for high-quality information in the context of Ix. We need to make sure that we find ways to measure the quality of the information regardless of what kind of guidance consumers need.

The one sure way to make sure that we are truly meeting the consumer’s information needs at particular moments in care is to continue observing their behavior and asking them what would help them live healthier, higher-quality lives.

The social networking pioneer Dan Hoch (who co-founded the famous BrainTalk Communities site) posted a provocative commentary on e-patients.net today titled “Information Overload: Problem or Not?”

Hoch notes that the information overload across industries has given rise to the Information Overload Research Group, which is dedicated to “reducing information pollution.” I agree with Hoch that the Internet’s information democratization has been an important driving force behind what he terms the “e-patients movement.” No doubt that is a critically important contribution.

I would never suggest that consumers should be prevented from unfiltered information. But availability of all information on a topic does not equate with real access to meaningful, usable information for everybody. For some people, OD’ing on information may not be possible but many people would like to get guidance from other sources–that could be their personal physician, another health care professional, a community health worker, or another person who shares the condition.

As stated on this blog earlier in the week, Susannah Fox noted that Pew Internet Project data demonstrate that 80% of Internet health information seekers turned to a professional in a time of crisis, and that this figure is much higher than any other information that Pew studies.

Those of us who advocate for information therapy (Ix) never suggest that information should be available “by prescription only.” Information prescriptions are simply another tool, designed to help people navigate the vast information that exists in cyberspace and elsewhere.

There’s been a really passionate and constructive dialog transpiring on The Health Care Blog triggered by Pew Internet health expert Susannah Fox’s post there on “E-patients can and will revolutionize health care.” I have weighed in with a couple of observations connecting what Susannah and many advocates describe as “e-patients” with the goals of information therapy (Ix).

The first post focused on how Ix can facilitate e-patients’ connections with their clinicians:

Peter’s point is important because a reluctance of clinicians (and/or systems to support them) to embrace patients’ use of new technologies often leads to “parallel play” in health care–where people end up pursuing two parallel tracks for tackling their personal health. In fact, Susannah’s Pew research demonstrated that–when told by their physicians to stop going online–most consumers either said they’d either switch doctors or “go underground.” In other words, consumers end up using the Web to address their health care needs but don’t talk about it with their clinicians–a recipe for (at best) inefficient care.

That’s why developing strategies to integrate targeted health information and personal electronic tools into the care delivery process (a.k.a. information therapy or Ix) is so important and has so much potential. That integration of patient-centered care and HIT is the focus of the 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care,” (June 12-13 in Washington, DC) where Susannah and other advocates for e-patients will be presenting.

The second post was really to help clarify that Ix is not meant to impede the efforts of e-patients–in fact, it’s just the opposite: Ix tries to help provide a better infrastructure for e-patients to gain support from other resources…

I completely agree with Cheryl that it was imperative for her to take control of her own care. And thank goodness she did! I have heard Cheryl’s personal story before, and she provides a powerful demonstration of the potential for e-patients to change the course of their own lives.

Regarding John’s questions, for some people, online searching works fine. However, many others report that they feel lost in the maze of information spun by the World Wide Web–reporting problems with some combination of: finding the most relevant information for their specific needs; understanding it; remembering it; and/or contextualizing it.

That’s why consumer surveys consistently report that, when asked from where they would most like to get information, consumers’ first choice is their own physicians.

That’s not at all to say that consumers shouldn’t access information on their own; I certainly do it all the time and I think everybody should do so as much as they want. In fact, one of the reasons why we’re holding this year’s Ix conference at the Newseum is because of how fervently we believe in consumers’ free access to information–thus the link to the celebration of the First Amendment.

But most consumers would prefer that their clinicians could support them in that process through: pointing them in the right direction; sifting through questions that arise together; putting into context for their particular situations; etc.

After a long build-up, Google finally launched its personal health record (PHR) for public consumption. There has been great anticipation that Google’s entry into the health care space could be the most disruptive innovation to a delivery system nearing a state of disarray. After all, before Google had invested even one dime in health care, each day more people were going to Google to answer their health questions than were going to a doctor.

The amazing economic and information transformation that Google has achieved in less than a decade coupled with the delays in launching Google Health led to perhaps unrealistic expectations. A quick review of what it has to offer leaves me with several questions…

• (The biggest question) Given that there is nothing in my Google Health profile right now and none of the links to Google’s partners provide any personal health data for me, what benefit is there for me to using Google versus a spreadsheet on my own laptop?
• Will consumers who have experienced auto-populated PHRs (e.g., via providers that have transferred EHR data to a secure patient portal) be interested in starting all over again (even if they can import that data–such as with Cleveland Clinic patients)?
• How big of a challenge will it be for Google to get consumers to trust the corporate behemoth with their personal data?
• Why does a search for “diabetes” in the Google Health search engine generate completely different content for me than looking under “diabetes” in Google’s “Health topics”?

This last question is particularly perplexing to me. Google Health tells me that one of the things it allows me to do is “Review trusted information on diseases and conditions and learn about possible medication interactions and other topics to talk your doctors about.” But I don’t know how they decide what is trusted information and why they direct me to different content depending on which way I decide to enter Google searching.

Part of the aforementioned unrealistic expectations is because health care is more complicated than many other information industries. There’s no doubt the health care delivery system is in dire need of dramatic change and that Google’s sheer power as an information broker has tremendous potential to shape any field that is so dependent on finding good information. I hope this is just the beginning.

At the 7th Annual Information Therapy (Ix) Conference, “WIxRED: Next-Generation Patient-Centered Care,” participants will hear from national leaders in implementing much of what Google Health is trying to do: Deliver the right information to the right person at the right time. Take a look at the agenda and register today.