Last week, my wife and I had a major scare: Our four-year-old son had his first asthmatic attack late Wednesday night. His racing breath rate, deep chest retractions, and fitful night of sleep had us really worried.

He’s doing fine now, but every time I turn from health information expert to health information consumer (we all are “patients”), I realize just how critical Ix is to high-quality health care.

In many ways, we love our pediatric practice. We were won over by the doctor when–during a very small-group open house/interview we had with him one evening when my wife was first pregnant–he said that he figured he had to either become a pediatrician or a teacher because he loved spending his days with children. It sounds corny, but he always seems that way when our three boys visit with him.

The practice also has its own nurse call line (available only during business hours) that is great for answering all kinds of routine questions or whether something deserves a visit, etc. And, the practice (about 7 pediatricians) really encourages to call the on-call physician if we have any concerns off-hours.

Of course, we did last Wednesday–and the doc called us right back at 10:30pm. She walked us through many important issues over about 10 minutes (and even called us back the next morning from her cell phone on her way back into the office).

In the office visit the next day (and the one the following day to check on Ryan’s progress), the doctors definitely took adequate time to answer all my questions (that I could think of at the moment anyway) and provided compassionate, thorough care.

But questions did come up: How do we know whether to give the albuterol as symptoms gradually seem to subside? Once it rained (presumably lowering the pollen count), how much do we still try to shield him from the outdoor allergens while he’s still recovering? How long should we expect to remain more fatigued from his somewhat acute event? How much of his extra “enthusiasm” (euphemism) should we attribute to side effects?

A lot of these questions probably would have been predictable. In fact, other parents of kids with asthma have told me in the last few days that these questions arose for them. Although I might not have wanted all the answers during the office visit, it sure would have been nice to have access to the specific questions at later moments in care.

And, now, the long-term questions are bubbling to the surface: What are the chances that this was a one-time event triggered by extreme pollen vs. a chronic condition (or somewhere in between)? What might give us clues along the way to answer that question? How close should we keep Ryan to his nebulizer as the pollen count goes back up?

My information needs change as Ryan’s condition changes, and I need Ix targeted to that moment in care. Despite the great care that we received from our pediatricians, there still are a lot of information gaps.

Let’s hope the care delivery system makes it easier for me and my clinicians to help Ryan better in the future.

The California HealthCare Foundation yesterday released a report–an excellent overview of the Health 2.0 movement, authored by Jane Sarasohn-Kahn. Titled “The Wisdom of Patients: Health Care Meets Online Social Media,” the report explains the theory the behind the collective wisdom of crowds, the Health 2.0 business opportunities, and offers something of a forecast for the future direction of the movement.

Conceptually, I fully support the democratization of information. In fact, that’s a central premise of information therapy (Ix)–one of the reasons why we are holding our 7th Annual Ix Conference (“WIxRED: Next-Generation Patient-Centered Care) at the just-opened Newseum, an interactive museum celebrating the first amendment and free access to information.

Whereas 1.0 (the initial benefit of the World Wide Web) was about ubiquitous access to health information, Health 2.0 involves democratization in the creation and dissemination of information. It’s not just about understanding; it’s about creating content–a higher level of learning and engagement.

I sincerely hope that we find ways to constructively integrate these tools and technologies into the care delivery process, leading to an intelligent redesign of the system. If the traditional delivery system fails to adopt Health 2.0 strategies (not to mention other innovations), they will evolve something of a separate and parallel health care system–one that might not (by itself) best serve consumers’ needs.

Much of the talk about the introduction of secure messaging (secure email) between clinicians and their patients revolves around convenience. There’s no doubt that it can greatly increase efficiency for both clinicians and patients.

The consumer argument is obvious, but I’m hearing the convenience factor more from clinicians as well lately–such as when a primary care physician in a busy community health center told me while I was shadowing him, “I wish the clinic made it possible for me to email with my patients. I would save so much time not trying to track down patients by phone, and almost all my patients have access to email.”

Not to diminish the convenience argument, but I’ve always been more interested in the health benefits that secure messaging offers. A good Associated Press/Washington Post article today highlighted both of these benefits.

In it, a 34-year-old woman from Milwaukee is quoted, “It makes sense to me to have the words laid out, to be able to re-read, to go back to it at a convenient time.”

In past blog posts, I’ve quoted the research that 40%-80% of everything a doctor tells a patient is completely forgotten by the time he or she gets home. Clearly, health communication can be greatly enhanced by any strategy that creates some lasting record to which the patient can return in order to extract the information he or she needs sometime down the road. That could be done through a secure message, an after-visit summary, or some other information prescription.

At some point, I think we’ll all wake up one day and realize that it was ludicrous that the US’s $2 trillion health care system still wasn’t utilizing these tools in the early 21st century. As Susannah Fox of the Pew Internet & American Life Project points out in the AP article, consumers are already using electronic tools in most other aspects of their lives.

How long will it take for these tools to be included into the norm of health care delivery?

The Health Improvement Institute (HII), a not-for-profit organization dedicated to improving the quality and productivity of America’s health care, has just released a new report, “Quality of Health Information on the Internet—10 Years On: 2007 Workshop Report.” A decade after its 1997 workshop on the Internet and health care, HII held a workshop last fall that included representatives from 40 organizations in an effort to assess progress in the field and where the next decade might take us.

I was among the experts invited to present a perspective. I shared both my academic research on the evaluation of Internet health information quality (well summarized in the IxCenter white paper, “The Mysterious Maze of the World Wide Web: What Makes Internet Health Information High Quality?”) and the relationship of that to information therapy (Ix).

The HII report generated a series of recommendations for advancing the most effective use of the Internet for future health care improvement:

• • Personalize online health information to cater to consumers’ specific needs
  • Integrate the use of online health information with the provision of health care
  • Present information in ways that appeal to consumers of different cultures, health literacy levels, ages, and socio-economic statuses
  • Encourage health websites to identify themselves with company information and to make efforts to protect consumer privacy in order to create trust
  • Increase the transparency of the processes by which the quality of information is rated, a trust mark is granted, and/or evidence is gathered
  • Educate consumers to continue seeking information from trusted sources.

This is an excellent summary of where we need to go to maximize the potential of the Internet. It also speaks directly to the goals of Ix and the need to integrate Ix principles into new Internet tools and care delivery redesign strategies.

The volume of opinion on the potential disruption to the health care delivery system of personal health records (PHRs) seems to be exploding. When leading mainstream peer-reviewed journals like The New England Journal of Medicine (which has three articles on the subject in this week’s edition) highlight the potential of PHRs, it suggests that something may really be going on.

Of course, we’re still a long way from realizing that potential. Although this is not a fact that many experts dispute, I remain concerned that some critical issues may get lost in the intense focus on privacy and security. Most notably, in the debate in the Journal and other places, there remains little emphasis on the importance of user-centered design and the connection of personal health data to content that helps explain what those data mean.

When the Pacific Northwest health system, PeaceHealth developed its PHR as part of the Robert Wood Johnson Foundation “Pursuing Perfection” project, they realized that the only way to ensure that the PHR really met their patients’ needs was to ask them and observe them. According to Dawn Gauthier, PeaceHealth’s Web Usability Designer, “Patient-centered care = User-centered design.” When she presented to the Institute of Medicine’s Roundtable on Health Literacy last month, she indicated that PeaceHealth determined that they needed to figure out patients wanted to accomplish by observing them and listening to them tell their stories.

The Department of Veterans Affairs (VA) has already launched electronic access to personal health data for veterans through My HealtheVet. They recognize that, to maximize its utility, they need to understand veterans’ experience in using the portal, so they are undertaking a survey of veteran users, to be followed up with more detailed focus groups and personal interviews. Moreover, the VA also realizes that a big component of My HealtheVet adoption will be the enthusiastic cooperation of VA clinicians, so they are surveying them as well.

I strongly believe that we need to build transparency into the design of our HIT systems. It’s also critically important that we not assume that “transparency” or “electronic availability of data” directly equates with access. Consumers cannot necessarily make sense of the data that flows from clinical and administrative data sources. Think about it: If I posted this blog entry in Greek, would you be able to understand it? The PHR that merely tells the consumer, “HbA1c = 8.6%, LDL = 146 mg/dL,” etc., may be “all Greek” to him or her.

That doesn’t mean that we shouldn’t do it. It just means that we have to build the information infrastructure to contextualize those data. For example, when Group Health Cooperative makes lab values accessible through a secure portal to all its members, it links every test to content that explains what the test is all about.

When organizations do this, their users experience something that gives them intrinsic value in managing their health. That’s what ultimately will lead to widespread adoption of PHRs.

…And that’s why these issues will be a central theme at our 7th annual Ix conference, “WIxRED: Next-Generation Patient-Centered Care,” June 12-13 at the Newseum in Washington, DC.

I had the opportunity to present to HHS’s American Health Information Community (AHIC) Consumer Empowerment Workgroup about information therapy (Ix) and patient-centered HIT.

Other interesting presentation today included from: Karen Sepucha of IxAction member, the Foundation for Informed Medical Decision Making (and co-author of the most recent IxCenter white paper, who presented on the use of decision aids for shared decision making; and Patti Brennan from the University of Wisconsin and one of the PCHIT Advisory Group members, who presented on the use of PHRs to engage patients and clinicians in healthy choices.

Workgroup members raised several questions following my presentation:

1. How can decision aids be tailored effectively to individual needs?
2. What are the next steps for the IxCenter in advancing Ix initiatives?
3. How important is privacy as a barrier to PHR/patient portal adoption?
4. What can be done to ensure that contextualizing information is incorporated into PHR and related tools?
5. Why did you report that impaired cognitive function was one of the biggest health literacy issues?

I’ll quickly summarize my responses below:

1. We need to maximize the different media we offer for consumers to access patient decision aids so that they best meet consumer needs. An interesting article in this past Sunday’s Washington Post highlights the fact that our opportunities for more powerful communication strategies will continue to explode exponentially.
2. I briefly explained a bit about the IxAction Alliance and our upcoming 7th annual Ix conference, “WIxRED: Next-Generation Patient-Centered Care.” In addition, we are planning some new activities which I will be blogging about shortly.
3. There’s no doubt that privacy issues need to be addressed because many consumers are very concerned about how external parties might use their personal health information. However, I also believe (as I have blogged about before) that the greatest opportunity to overcome privacy concerns is for consumers to actually experience intrinsically meaningful and valuable tools (value from their perspective).
4. Connecting individuals’ personal health information to health content that contextualizes it is the crux of Ix. More to come on this blog in the near future.
5. In my observational experiences in the exam room during the PCHIT Initiative, patients with impaired cognitive function faced the greatest barriers to using Ix. There need to be better hand-offs and standardized systems for building caregivers and others into the transmission and receipt of Ix.

I’ll build on some of these issues and share a few other comments from the AHIC discussion in future posts.

For now, I’d be interested in others input on these questions.

During the Patient-Centered Health Information Technology (PCHIT) Initiative, one of the central tenets was that the best way for us to understand what was really going on with consumers and clinicians, the best way to was to actually observe them. We called this shadowing, and most of what we did was in the exam room, though we shadowed some consumers in their experiences using PHRs from their homes–such as with consumers in Boston, among migrant farm workers in California, and our own experiences with health plan tools.

I was interested to see a story today about the New York State Health Commissioner shadowing a PCHIT user. Commissioner Richard Daines shadowed a county nurse making a house call to see how a consumer makes use of a new technology that helps her manage her chronic lung disease and stay connected with her clinicians from far away.

Is this the beginning of a shadowing trend? What better way is there to learn about the needs of real consumers?

On April 3, URAC (one of the leading independent health care accreditation organizations) released revised standards for public comment for disease management (DM) and case management (CM) organizations. The primary new standards relate to information therapy (Ix) and health literacy.

You can find the most relevant sections on pages 18-21 of the CM standards and pages 22-24 of the DM standards.

This represents an important step forward in the growing expectation that Ix be delivered as part of the normal delivery of care, particularly for people with chronic or complex conditions.

Organizations that want to submit public comments to URAC to make recommendations and/or voice support for these new standards, need to respond by by May 21.

The IxCenter continues to work with other organizations to promote the expectation of Ix delivery and enhance market rewards for it.