The U.S. Agency for Healthcare Research & Quality (AHRQ) has just released a thorough literature review of the “Impact of Consumer Health Informatics Applications.” The report, prepared by the Johns Hopkins Evidence-based Practice Center and led by Chris Gibbons, is part of AHRQ’s evidence report/technology assessment series.

Gibbons et al concluded that “available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.”

The abstract is below and can be accessed here and has a link to the full 500+-page report.

Objective: The objective of the report is to review the evidence on the impact of consumer health informatics (CHI) applications on health outcomes, to identify the knowledge gaps and to make recommendations for future research.

Data Sources: We searched MEDLINE®, EMBASE®, The Cochrane Library, Scopus™, and CINAHL® databases, references in eligible articles and the table of contents of selected journals; and query of experts.

Methods: Paired reviewers reviewed citations to identify randomized controlled trials (RCTs) of the impact of CHI applications, and all studies that addressed barriers to use of CHI applications. All studies were independently assessed for quality. All data was abstracted, graded, and reviewed by 2 different reviewers.

Results: One hundred forty-six eligible articles were identified including 121 RCTs. Studies were very heterogeous and of variable quality.

Four of five asthma care studies found significant positive impact of a CHI application on at least one healthcare process measure.

In terms of the impact of CHI on intermediate health outcomes, significant positive impact was demonstrated in at least one intermediate health outcome of; all three identified breast cancer studies, 89 percent of 32 diet, exercise, physical activity, not obesity studies, all 7 alcohol abuse studies, 58 percent of 19 smoking cessation studies, 40 percent of 12 obesity studies, all 7 diabetes studies, 88 percent of 8 mental health studies, 25 percent of 4 asthma/COPD studies, and one of two menopause/HRT utilization studies. Thirteen additional single studies were identified and each found evidence of significant impact of a CHI application on one or more intermediate outcomes.

Eight studies evaluated the effect of CHI on the doctor patient relationship. Five of these studies demonstrated significant positive impact of CHI on at least one aspect of the doctor patient relationship.

In terms of the impact of CHI on clinical outcomes, significant positive impact was demonstrated in at least one clinical outcome of; one of three breast cancer studies, four of five diet, exercise, or physical activity studies, all seven mental health studies, all three identified diabetes studies. No studies included in this review found any evidence of consumer harm attributable to a CHI application.

Evidence was insufficient to determine the economic impact of CHI applications.

Conclusions: Despite study heterogeneity, quality variability, and some data paucity, available literature suggests that select CHI applications may effectively engage consumers, enhance traditional clinical interventions, and improve both intermediate and clinical health outcomes.

When Obama Administration Chief Technology Officer Aneesh Chopra started his keynote at today’s Health 2.0 Conference in San Francisco, he began by mentioning the work that I did when the two of us were at the Advisory Board Company (that’s him there pointing to me), where I first began experimenting with the concept of information prescriptions. That came out of a two-year project (1999-2001) where we developed in-depth consumer health content. Just as (or maybe more) importantly, we shadowed patients and clinicians in hospitals and clinics and conducted dozens of structured interviews with people with diabetes (and their families).

The first panel that followed Chopra, I saw some cool tools demo-ed, but I didn’t get a sense of whether they truly support patient-centered care and meet consumers’ real health needs. After the panel on “Clinical Groupware and the Next Generation of Clinician-Patient Interaction Tools,” I asked the question:

“How did you collect information from consumers in advance of developing your applications? Did you do focus groups, structured interviews, or direct ethnographic observation to understand what tasks consumers really want to accomplish? And, at what point in the development process, did you do that critical research?”

Only one of the panelists chose to respond to the question (I think it was Arien Malec, VP, Product Management, Relay Health, but I’m not sure). His answer was somewhat vague (compared to my rather specific question), with the exception of discussing how they incorporate user feedback they receive after the deployment of tools. Although I agree that user feedback (a core part of the Health 2.0 model) is invaluable for refining tools, it is a fundamentally different part of the research & development arsenal.  And, more to the point, it was not an answer to my question.

So, when (following an excellent “The Patient Is In” session) I moderated the “Search & Content” session that featured six different Health 2.0 demos, I decided to keep asking the question until I got an answer that satisfies me. After all, the main reason that I could see for creating a panel with the diversity of demos covering all of search and content was because they basically address how we can help consumers get the right information at the right time to meet their decision-making and health management needs (basically colloquial for information therapy).  I figured that I might get a better answer if I re-framed the question:

“What did you do in advance of building your technology to ensure that what you were building met specific consumer needs?”

I admit it was a loaded question in that I have a strong bias. Before investing millions of dollars in product development, I believe that — if the goal is to develop consumer-centric tools — every company should begin with some combination of these patient-centered research approaches:

• Consumer surveys
• Focus groups with patients and families/caregivers
• Structured, extensive interviews with consumers
• Shadowing of patients and clinicians
• Direct, ethnographic observations of consumers in the settings where they “do” most of their health care (e.g., their homes, workplaces, schools, etc.)

If we want to meet Chopra’s call for robust innovation that transforms our economy and the health care delivery system, we first need to identify the health tasks that consumers want to accomplish. The best way to figure that out is to get answers directly from consumers before we write a single line of programming code.

I find it interesting that the blogosphere continues to discuss the “false dichotomy” of our “Health 2.0 Meets Information Therapy (Ix)” Conference. On The Health Business Blog, Michael Segal, MD, PhD, blogged yesterday on this topic, concluding that, “the most useful resources come from getting physicians and patients to work together closely to come up with the insights and resources that are most useful,” which “also illustrates how the ‘tension’ between Health 2.0 and Ix falls away in practice.”

I agree (and the conference confirmed) that far more synergies than tensions exist between the two movements. I also am aware of many Health 2.0 approaches being integrated into Ix applications, and Ix offers a vehicle for integrating Health 2.0 tools into the care delivery system.

However, the core of the Health 2.0 movement — primarily spearheaded by entrepreneurs — remains mostly distinct from the heart of the Ix movement. For example, there is only one overlapping member organization (Enhanced Medical Decisions) between the 45 members of the IxAction Alliance and the 20 members of Health 2.0 Accelerator.

While we share a common objective of advancing patient-centered health information technology, there remains little commonality in the organizations driving each movement. What drives that difference? And what needs to happen to change it?

I had the opportunity to meet with Aneesh Chopra — our country’s first Chief Technology Officer — last week. The CTO serves as Associate Director of the Obama administration’s Office of Science & Technology Policy (OSTP), which “serves as a source of scientific and technological analysis and judgment for the President with respect to major policies, plans and programs of the Federal Government.” OSTP will also lead interagency efforts on a wide range of science and technology policy issues, certainly to include health information technology (HIT) in collaboration with David Blumenthal in the Office of the National Coordinator for HIT.

Chopra — whom I’ve known for years from our days together at the Advisory Board Company — is not only really sharp but very creative in thinking into the future about how technology can evolve. The opportunity is enormous, but capitalizing on it requires more than just technology development but policy planning as well. One could argue that the pace of technology advance over the last several decades arguably has outpaced our imagination, yet we haven’t harnessed those breakthroughs in the form of health care productivity or quality gains.

The New York Times Sunday Business section explored the government’s role in stimulating innovation yesterday. Steve Lohr cites Chopra’s interest in building “innovation platforms” to spur growth, but Lohr notes that there are at least nine countries that have been more aggressive than the U.S. in using government to drive innovation: Australia, Brazil, Britain, Chile, Colombia, Finland, India, Norway and Singapore.

The Center for Information Therapy (IxCenter) also has been focused recently on how stimulate more robust innovation in the field of information therapy (Ix). In some ways, this was a natural evolution of our partnership with Health 2.0, LLC, in preparing for the first-ever “Health 2.0 Meets Ix” conference we held two months ago. There, we explored (among other things) how innovative health 2.0 tools could be combined with Ix strategies to create new models for health care delivery.

We also have launched two collaborative projects with IDEO — the innovation design firm responsible for creating everything from the first Apple mouse to the Swiffer — in our search for rapid-cycle innovation in Ix strategies. Thanks to a grant from the California HealthCare Foundation, we will work with IDEO to develop Ix strategies to overcome barriers in implementing innovative consumer engagement strategies with safety-net populations in California. We will address text-messaging applications and other approaches to information prescribing.

Another experiment involves applying the IDEO model to Ix innovation design with our IxAction Alliance in its monthly webinar. In addition to trying to develop a robust model for Ix innovation design, we also are testing out whether we can apply the highly intensive in-person workshops and collective observation of users to the virtual and dispersed nature of our monthly IxInsights webinars. That has major policy planning implications in terms of the scalability and efficiency of how we stimulate innovation nationwide.

The IxCenter will be actively pursuing robust approaches Ix innovation design strategies over the coming months, and we’ll certainly be sharing everything we learn in this space. In the interim, it would be great to get suggestions and other input from readers on the best strategies for rapid-cycle, breakthrough innovation.

The latest version of the e-health bible was published today by Susannah Fox & Sydney Jones at the Pew Internet & American Life Project. For nearly a decade, many of us have relied on Pew’s data to understand consumer needs with respect to health information technology (HIT). Susannah gave a sneak preview of some of Pew’s new data at our April “Health 2.0 Meets Information Therapy Conference,” but there’s nothing quite like getting to sink your teeth into 70 pages of Pew data.

Some of what’s most interesting is what has changed in the last 8 or 9 years. In recent conversations I’ve had about Healthy People 2020 or other prognostications about the next decade of HIT developments, we sometimes forget how quickly the world changes technologically speaking. Comparing Pew’s 2000 data to Nov-Dec 2008 sample of American adults:

• Internet access: Jumped from 46% to 71%
• Looking online for health information: Jumped from 25% to 61%
• Broadband access: Jumped from from 5% to 57%

Just as importantly, however, there’s a little bit of plus ça change, plus c’est la même chose. Despite the growing popularity of the Web, more people turn to a health care professional (86%) and a friend or family member (68%) than the Internet (57%).

Perhaps what I’ve always found most important about the Pew data is understanding the impact of the Web on how consumers make health decisions. After all, if a Google search falls in the forest and nobody does anything with the tree they downloaded, has it really made a difference?

Indeed, Pew data demonstrate that the information found on the Internet does influence decision making for a majority of consumers who go online. Of those people:

• 60% say the information found online affected a decision about how to treat an illness or condition.
• 56% say it changed their overall approach to maintaining their health or the health of someone they help take care of.
• 53% say it lead them to ask a doctor new questions, or to get a second opinion from another doctor.
• 49% say it changed the way they think about diet, exercise, or stress management.
• 38% say it affected a decision about whether to see a doctor.
• 38% say it changed the way they cope with a chronic condition or manage pain.

And, on the critical “help or hurt” question, 60% of online health users say they or someone they know has been helped by following medical advice or health information found on the Internet, in contrast to just 3% who say it has caused harm. The former figure has nearly doubled since 2006, whereas the latter has stayed the same.

I’m not disappointed (but not surprised) that consumer engagement tools seem to not have done a great job so far. Only 19% of online health users have signed up to receive updates about health or medical issues. We clearly need to do a better job of meeting people where they are at in order to get them more engaged in online management of their health.

Finally, for understanding the impact of demographics on Americans’ use of the Internet, broadband, and cell phones, there’s nothing that tells the story as well as Pew’s access thermometers, which have now been updated with December 2008 data.

(Methodology Sidebar: Pew — in part made possible by its partnership with the California HealthCare Foundation — deserves special credit for two methodological advances. First, Pew now surveys (I think they added this a year or two ago) using both landline and cell phone samples, recognizing that an increasing and unevenly distributed portion of the US population cannot be reached by landline (this issue got a lot of press — particularly from places like Pollster.com and 538.com — during the 2008 presidential primaries and general election, as many thought that could lead to underestimations of the Obama vote). Second, they did Spanish-language interviewing to capture information from the second most prevalent language spoken in the US. This substantially improves the validity of all of Pew’s demographic comparisons that involve Latinos.)

Thanks to Pew for continuing to facilitate a data-driven conversation about consumer behavior with respect to the Internet.

I’ve done my best to consolidate all of the media coverage I can find of the first-ever “Health 2.0 Meets Information Therapy (Ix)” Conference. I still see things trickling in — and, if you know of coverage I’ve missed, please let me know in the comments section — so I will update this page as I learn more.

• Reactions from conference organizers:
  • Joshua Seidman: Ix-Health 2.0 Conference Reflections and Ix-Health 2.0 Conference Day 1 highlights
  • Matthew Holt: Health 2.0 Met Ix…
• Twitter summaries:
  • Collection of all 3,400 tweets posted (mostly) during the conference
  • Tweet stream analysis done by Chris Hogg
• Media outlets:
  • ICYOU video interviews of speakers and participants
  • MobiHealthNews photo essay
  • Healthcare IT News by Jack Beaudoin
  • Patient Safety & Quality Healthcare by Susan Carr
  • [UPDATED] The Doctor’s Channel video summary
  • [UPDATED] HCP Live audio interviews
• Blog posts:
  • Health 2.0 meets Ix: The Rise of the Patient Voices by Gilles Frydman on e-Patients.net, and a follow-up post on Health 2.0/Ix Conference: What About Minority Representation?
  • From Health 2.0 Meets Ix: A Breathtaking Display of Possibilities by Brian Klepper
  • “We Will All Be Patients Someday” — Health 2.0 Meets Information Therapy by Ted Eytan
  • Mobile could be a game-changer - but only for those who get in the game by Susannah Fox on e-Patients.net
  • Thoughts from Health 2.0 Meets Ix Conference by Blake Zenger
  • The Public’s Belief in Scientific Uncertainty and the Importance of the Social Health Internet by Jane Sarasohn-Kahn
  • The Doctor’s Role in a Health 2.0 World by Lygeia Ricciardi/Project Health Design
  • Health 2.0 Hype or Reality? by Bart de Witte
  • Health 2.0 Meets Ix: No More Patient Patients by Kevin Kruse
  • Too Many Content Plays = Unsustainable by John Moore
  • Health 2.0: A Lot of Hot Air in this Balloon by John Moore
  • [Updated] Observations from a distance - Health 2.0 Conference Part 1 by Lodewijk Bos/ICMCC
  • [Updated] Observations from a distance - Health 2.0 Conference Part 2 by Lodewijk Bos/ICMCC
• Other:
  • Slideshow and links to few conference-related articles from MDNG

The video crew from ICYOU has done a great job of capturing insights from lots of innovative thinkers were part of our  Ix-Health 2.0 Conference two weeks ago. You can go to the home page and search on “Health 2.0 Meets Ix” to find interviews with the three conference organizers (me, Matthew Holt & Indu Subaiya) as well as:

• Anna-Lisa Silvestre, Kaiser Permanente
• Roy Shoenberg, American Well
• Marlene Beggelman, Enhanced Medical Decisions
• Don Kemper, Healthwise
• Esther Dyson, EDventure
• Jamie Heywood, PatientsLikeMe
• Jordan Shlain, Current Health
• Gale Wilson-Steele, CareSeek
• Judy Feder, e-patient
• John Haughton, DocSite
• Iri Amirav, iMedix
• Fred Eberlein, ReliefInsite
• Eugene Borukhovich, HealthWorldWeb
• Ash Damle, MEDgle
• Lygeia Ricciardi, Clear Voice Communications

I think there still may be more interviews to come.

Matthew Holt has posted some additional thoughtful reflections on our joint Ix-Health 2.0 conference at The Health Care Blog today.

You can also find the more than 3,000 tweets posted on Twitter in one place.

Here are some top-level reflections from the second day of the first-ever Health 2.0 Meets Ix Conference (see here for Day 1 thoughts as well)…

The online output from the conference demonstrates how fast the online user-generated world has changed. Matthew Holt and I met less than four years ago when he live-blogged the 2005 Ix Conference on The Health Care Blog. The concept of live-blogging our event seemed like a complete novelty at the time. In contrast, there were more than 100 different unique twitterers at our conference this year, and (according to Enoch Choi’s rough estimate) they generated more than 3,000 tweets.

Susannah Fox reported new Pew Internet & American Life Project data reinforcing that the average consumer’s first place to go for health information is their clinicians. Consumers rely more on professionals in health care than any other industry. It’s fascinating in the context of our lively discussion yesterday about what the concept of “expert” means in a field as complex as health care. The fact is that there’s so much that we don’t know—which is reminiscent of Einstein’s comment late in his life that he knew less than 1% of what there is to know about physics.

Thanks to Neil Calman for making sure that we not only focus on cost and quality, but just as importantly on equality. I couldn’t agree more. And more to the point for all of us in this space: As we evolve the Ix and Health 2.0 fields, we must ensure that the answers we come up with meet the needs of everyone in our diverse population. Otherwise, any gains in quality we achieve will increase the health and health care disparities that already exist.

Everything we do to reform the delivery system needs to start with the consumer. We can’t build patient-centered care delivery if we don’t let the consumer guide us to what will make it easier for them to live healthier lives. We can learn from consumers in several ways, each of which offers different information:

• Representative surveys of the population—allow us to understand the prevalence of various consumer behaviors
• Structured one-on-one interviews – provide a vehicle for a deep exploration of consumers’ perspectives on their health needs and desires
• Focus groups – similar to structured interviews, but introduce a group dynamic to understanding consumer perspectives
• Online communities – Teach us about what e-patients do all the time.
• Observations of consumers in their normal daily living and in their encounters of the delivery system – provide a window into what it’s exactly like to live in someone else’s shoes

Paul Wallace (who, in the mid-1990s, was still a practicing oncologist) shared his own story from one of his ovarian cancer patients that shaped much of what he does now. After demonstrating that she knew more about her specific condition than he did, she told him, “Don’t tell me what to do; tell me what it means for me.”

Danny Sands described how health care is a participatory sport, not a spectator sport. I couldn’t agree more, which I expressed in my post, “Baseball and Health Care: Only One is a Spectator Sport.”

Although no doubt some divergence of opinion existed among the more than 500 people with us for the last day and a half, I repeatedly heard from the stage, the audience and in the hallways a general consensus that Ix and Health 2.0 have far more synergies than tensions. Matthew, Indu and I clearly agree. But these two movements approach the patient-centered orientation of care from different perspectives. The exploration taught us all a lot about what we need to do to drive a reformed health care delivery system.

Here are some things that struck me about the first half-day of the first-ever “Health 2.0 Meets Ix” Conference in Boston today.

• I agree w/ Don Kemper that there are huge problems with the model of the “role of the patient is to be patient.” See “Ix Word Play: The Im-Patient Consumer” for more detail.
• This dichotomy of Health 2.0 for the rare/complex conditions (the “long tail”) and Ix for reducing known gaps in care (managing common chronic conditions) is interesting, but I think it’s a vast oversimplification. The reality is that you still need both — the strategy behind the blending is critically important.
• Matthew Holt notes that search doesn’t mean you get the right answer…just gets you in the right neighborhood. Sometimes that’s good, but often consumers want some more targeted leads.
• Interesting to see the PSA (prostate cancer screening) example used as demonstration of Health 2.0 value. Not that it isn’t, but PSA testing is often also cited as a great Ix opportunity, because prescribing evidence-based decision aids on PSA has significantly reduced unnecessary PSA testing.
• Both Amy Tenderich & Rushika Fernandopulle emphasized a point discussed here that we need to focus on how we help consumers manage the 525,500 minutes of the year they live outside the clinical delivery setting, not the 100 minutes they spend in it.
• James Hereford made 7 fabulous points in 7 minutes about building Ix into the delivery system:
  • You have to deliver what patients want (doesn’t matter how cool the technology is).
  • It has to make sense for clinicians from a clinical perspective.
  • It has to make sense for from a clinical workflow perspective.
  • Focus processes on the value proposition for the patient (I may have mangled this one a bit).
  • Information needs to be common, ubiquitous, and well-designed.
  • Health care is all about trust; whatever we do needs to enhance trust in the patient-provider relationship.
  • Incentives are critical.
• Don Caruso (a family physician in a small community) talked about how one key for him to practicing better is “figuring out how I can use patient information.”
• Caruso also talks about the extension of the patient-centered medical home model to more of a “medical village” by applying the PCMH concept to preventive care as well as chronic care.
• Rushika Fernandopulle points out that we need to go well beyond patient as partner; it’s that “patients need to control their own health care.”
• To do this, Rushika says, we have to engage the purchasers (employers, unions, etc.) because they’re the ones footing the bill.
• Finally, Rushika suggests that “the power of Health 2.0 is empowering patients to vote with their feet.”

Lots of great stuff to chew on, but so much more coming tomorrow @ 8:00am. Right off the bat, we’ll jump into the policy issues that a number of questioners in the audience couldn’t wait to talk about today.

We’ll also in the first session get into issues of safety-net populations vis-a-vis Ix & Health 2.0, something notably absent from today’s discussion.

Will sum up again tomorrow, but the live tweeting has been crazy…and also jamming up the lav mikes, producing some sound system challenges. I think we’ll be in better shape on that front tomorrow.