I received the following request from NCQA yesterday for the IxCenter to reach out to our collaborators for submissions to Quality Profiles since NCQA recognizes that information therapy (Ix) is a widely used strategy for quality improvement using HIT to address the 6 priority areas below.

Quality Profiles is published annually by NCQA. The overall goal of this series is to provide health care organizations and employers with a rich, up-to-date collection of quality improvement resources, illustrated through best practices, to use as a motivation and foundation for new program development. The seventh edition of Quality Profiles will align with the newly announced national health priorities as defined by the National Priorities Partnership. By highlighting successful ways organizations have incorporated HIT into their patient care processes, this edition of Quality Profiles will help to continue building on the momentum for HIT adoption and implementation.We will include case studies from organizations that will showcase how HIT was used to successfully impact one or more of these 6 areas:

1. Patient & family engagement
2. Population health
3. Safety
4. Care coordination
5. Palliative & end-of life care
6. Overuse

For those organizations that submit applications that involve Ix initiatives to Quality Profiles, we’d appreciate you sharing your best practices with the IxCenter as well. We are in the process of building a methodical library of Ix research, and are collecting as much research as we can both from the peer-reviewed literature and the more organic innovations being developed.

As countless health care experts have said, comprehensive legislative health care reform requires attention to access, cost and quality issues. While much of the public debate grows around the best strategies for coverage expansion, new legislation to deliver patient decision aids offers a vehicle for improving the health care delivery system.

On May 21, Senator Ron Wyden (D-OR) introduced S.1133 — co-sponsored by Senator Judd Gregg (R-NH) — the Empowering Medicare Patient Choices Act, which was matched on the House side with H.R.2580 by Congressman Earl Blumenauer (D-OR). The main purpose of the legislation is to expand the use of shared decision making (SDM) in Medicare to help beneficiaries — in collaboration with their clinicians — make more informed treatment decisions based on an understanding of available options and each individual patient’s circumstances, beliefs and preferences.

SDM has an extensive scientific base demonstrating its potential for much better, more patient-centered care and reduction of unnecessary, costly procedures. For those interested in more background on SDM, the best resources are (in the US) the Foundation for Informed Medical Decision Making (founded by luminaries Jack Wennberg and Al Mulley) and (internationally) the Ottawa Health Research Institute (with SDM leadership by Annette O’Connor, the Tier 1 Canada Research Chair in Health Care Consumer Decision Support…don’t you think the US could use someone with that title?).

This program creates a three-stage phase-in of patient decision aids into Medicare. Phase I involves a pilot, during which an independent entity would create a process for developing consensus-based standards and a certification process to ensure decision aids are effective and provide unbiased information.

During Phase II, providers would be eligible to receive reimbursement for using certified patient decision aids. The final stage involves requirements to ensure that all Medicare beneficiaries receive patient decision aids prior to receiving treatment for a preference-sensitive condition. At that point, reimbursement can be reduced by 20% for providers whose patients are not getting their information therapy (Ix).

Based on estimates from Lewin, full SDM implementation just in the 11 conditions this bill targets would save $4.1 billion in 2010 and increase to annual savings of $7 billion by 2017. The program would distribute the savings in three ways:

• 50% to participating providers based on their performance
• 25% to expand provider participation through funding of SDM centers and providers
• 25% to be returned to the Medicare program.

The savings would phase out over time and ultimately become penalties, so there’s a nice blend of carrots in the early years and sticks later.

This federal legislation builds on innovative policy being developed in the states. Washington became the first state to pass an SDM law in 2007, and several other states — Vermont, Maine, Minnesota, and — have been working on similar legislation in 2009.

Prescribing decision aids to consumers is one of the great opportunities for achieving true delivery system improvements in quality and efficiency. These Ix tools will produce better outcomes at lower costs and result in a true participatory medicine environment. If we want to improve care delivery and have the money to cover the nearly 50 million uninsured Americans out there, we need common-sense system reforms like this one to be embedded into the broader health care reform legislation.

Nancy Shute has a nice piece in yesterday’s Charlotte Observer that summarizes “6 ways electronic medical records might make diagnosis easier and more convenient, and care safer.” An excellent writer, Nancy has done a good job of boiling down all the grandiose discussions on EHR functionality into tangible, “what have you done for me lately?” functions. This consumer orientation to EHR functionality is badly needed as we define “meaningful use.”

With every one of them, however, by attaching information therapy (Ix) to the technological function, we could substantially expand the utility of that application. So, I’d like to propose amendments to Nancy’s six high-impact apps.

1. “Skip trips to the doctor.” Yes, secure e-mail with your clinicians is a huge convenience factor, and attaching an information prescription about what to do next (or when it really would be time to come into the office) would provide additional value to the patient.
2. “Track Mom’s medical chart even if you’re in Albuquerque or Altoona.” As long as you can actually interpret what’s in the online record, that’s fine. But what if the medical jargon raises more questions than it answers. If the chart via the portal contains links to content that contextualizes the data points, you’ll feel a lot more comfortable staying in Albuquerque or Altoona.
3. “Get lab test results without having to play phone tag with the doctor’s office.” By hyper-linking the lab test results to brief explanations of what each acronym means, what the “normal” ranges are, and what it means if your values are “abnormal,” the lab values will have much more meaning.
4. “Never again drag X-rays to a specialist.” Very few lay people can interpret radiology images, so attaching the radiology report (translated into plain language) to the digital files will empower consumers.
5. “Find out if your prescriptions could have dangerous interactions, before you start taking them.” But then what? Provide some guidance to the consumer about alternatives or what questions to ask your doctor, pharmacist or other health care professional.
6. “Use your cell phone to tap into your health records.” Put everything together from above, and the more ubiquitous cell phone really will ring!

As we move forward in defining what we want out of “meaningfully used” EHRs, let’s take a page from Nancy’s book and boil these functions down into what they actually mean for the day-to-day lives of consumers. But let’s also go the extra step of making the most of the electronic opportunities that present themselves by connecting data points to content that helps all consumers use these tools most effectively.

There’s a lot of buzz out there in the blogosphere about the next steps on health information technology (HIT) standards. Certainly, the recommendations of HHS’s new HIT Standards Committee to its new HIT Policy Committee clearly will inform how HHS implements the HIT provisions of the American Recovery & Reinvestment Act (ARRA).

Many of the decisions will need to be made quickly, which is part of why John Halamka (Vice-Chair of the Standards Committee) put some of his thoughts on the Web this morning, as did Mark Leavitt, Chair of the Certification Commission for HIT (CCHIT).  Leavitt was specifically defending CCHIT’s structure in the face of a recent Washington Post article and other comments made on The Health Care Blog, among other places.

I certainly wouldn’t pretend to have all the technical answers for the HIT Standards Committee. The Center for Information Therapy firmly believes that we need to advance the discussion productively, as I believe virtually all of those engaging in online dialog are trying to do.

Among the most critical issues that has not been adequately addressed is the relationship of standards-setting to the ultimate impact on consumers’ access to meaningful, useful electronic information to help them manage their health. An Issue Brief I wrote a few years ago for the California HealthCare Foundation is just as relevant today (maybe more so given the stakes involved in 2009!), so I’d highly recommend it to those interested in improving health care delivery.

The basic premise of the CHCF Issue Brief, “Lost in Translation: Consumer Health Information in an Interoperable World,” is:

“…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…”

I urge all those working hard to drive forward meaningful use of HIT to consider the issues raised in this CHCF Issue Brief and ensure that HIT implementation leads to more effective and efficient care for everyone.

The visionary Don Berwick came out May 19 with a brilliant new piece in a Health Affairs Web Exclusive, “What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist.” It should be required reading for anybody who cares about making the future health care delivery system better than the current one.

In the article, Berwick offers a profound defintion of what “patient-centered” really should mean, and all I could think about is one of the other most important health care definitional issues of our time: “Meaningful use” of health information technology (HIT). At last week’s first HIT Policy Committee hearing, HHS National Coordinator for HIT David Blumenthal called meaningful use “in some ways a revolutionary concept.” And it could be, particularly if those at HHS who define it do it keeping in mind Berwick’s definition.

Some might think that these two definitions have little to do with one another. After all, isn’t “meaningful use” all about some practical applications of ensuring that adoption of HIT actually results in better, more efficient care? Indeed. In fact, Berwick points out that, “In the more normal [non-health care] world of products and services, excellence is in the eye of the customer.” And, equally importantly, this “is not a moral position; it is a pragmatic one.”

Specifically, Berwick goes on to say, “The business theory underlying modern quality strategies is that producers that meet consumers’ needs, as judged by consumers, will thrive, and those that do not will wither.” That, for example, is something that Toyota became famous for understanding compared to the American auto industry (see here for a previous discussion of how Toyota ties into patient-centered care).

Beyond that, it’s also fair to ask: What is the relationship between these two definitions? Virtually every thinking person in the HIT world has repeated the mantra (something to the effect of): “HIT is not an end; it’s a tool for helping to achieve better, more efficient care…it’s a necessary but not sufficient element of an improved care delivery system.” More importantly, we also know that simply automating existing processes of care will not produce those outcomes. One of the things that we do know will have a substantial impact — particularly in driving better and more efficient chronic care management (where most of our health care dollars are spent) — is engaging the patient in meaningful ways.

Berwick provides several examples of a patient- and family-centered health care system, at least four of which are good examples of what meaningful use of HIT must produce.

• Patients and families would participate in the design of health care processes and services.
• Medical records would belong to patients.
• Shared decision-making technologies would be used universally.
• Patients physically capable of self-care would, in all situations, have the option to do it.

There are many more, but this is a good start. More on “Bringing Patients into the Health IT Conversation About ‘Meaningful Use’” can be found in an excellent post by David Kibbe and Brian Klepper today on the The Health Care Blog. In addition, the IxCenter is working with the Consumer Partnership for eHealth in thinking about how to define a consumer pathway to meaningful use of HIT.

As I wrote a couple of months ago, part of defining “meaningful use” is answering the question, “Meaningful to whom?” If we want the enormous federal investment in HIT to benefit the people who invested the money — consumers a.k.a. American taxpayers –  we had better ask the right question. For my tax dollars, Neil Calman’s query yesterday at a Brookings forum is the root of the question, “How will it benefit patients?” HIT success will require that HIT adoption answers that question in a way that consumers can readily answer it for themselves.

Following up on my post yesterday in which I discussed the similarities and differences between newspaper and health care content commodification, I was steered to a great piece of video history by a tweet from Dan Cohen, Director of Center for History and New Media at George Mason University.

This YouTube video is a local news segment from a San Francisco TV station in 1981 about this wild experiment of 8 newspapers to deliver the content of their daily publications to home computers.

Although the story is delivered with complete seriousness, it was hard not to laugh out loud. I’m not sure which is the funniest piece of the story:

• The newscaster seemingly uncomfortable with the word “computer.”
• The caption under a consumer that reads, “Home Computer Owner.”
• It takes 2 hours to download all the contents (text only) of the daily newspaper.
• The San Francisco Examiner staffer saying that they’re trying to learn…and perhaps unintentionally foreshadowing the direction of the online news industry: “We’re not in it to make money. We’re probably not going to lose a lot, but…”

Some good lessons here on what technology predictions from less then 3 decades ago look like in retrospect.

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.

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

I participated in a personal health record (PHR) workshop yesterday hosted by the Center for Democracy & Technology (CDT). CDT’s goal was to gain input from a wide array of stakeholders (an impressive collection of about 40 health care leaders with different types of expertise in PHRs) to help inform CDT’s recommendations to federal agencies — HHS and the Federal Trade Commission (FTC) — and try to build some degree of consensus among key stakeholders.

[NOTE: All comments at the meeting were not for attribution, but I confirmed with the organizers that there was no problem in sharing my own impressions following up from the meeting.]

There’s no doubt that current federal statutes and regulation (and there are potentially many that apply to PHRs) create considerable uncertainty regarding how to balance promotion of consumer engagement with concerns over privacy and security. Existing regulations from HIPAA, the Electronic Communications Privacy Act, and others coupled with the new provision from the American Recovery & Reinvesment Act (ARRA) — not to mention the complexity of layering state laws on top of that — provide a lot of work for privacy attorneys. But with all the different (potentially) applicable federal and state laws/regulation, there is very little practical guidance on what has to go into privacy policies. PHR implementers can find some guidance from FTC consent decrees, which can represent an expansion of the law.

That lack of clear legal guidance clearly has not helped get consumers engaged in using PHRs to manage their health. Estimates on nationwide PHR usage typically fall in the single digits (in terms of percentage of the US population).

Controversy over the estimates prompted me to share the fact that I’m likely registered to use multiple PHRs (I don’t even know, but probably 4 or 5), but I’m not actually using any of them because my experience has not proven any of them to provide any value to me in managing my health. The only PHR I use is for Molly Seidman — my golden retriever — because my vet (Friendship Hospital for Animals) offers a simple pet portal free of charge that includes messaging with the clinic, health reminders, medication management tools. In fact, during the meeting yesterday (literally less than an hour after I made this comment), some helpful information therapy (Ix) arrived in my email inbox that linked relevant educational information about Molly to the pet portal.

[Why, oh why, does the $2.5 trillion US health care system not offer the humans in my family as good care as my golden retriever gets? Not that she’s not deserving, but…]

What’s clear to me, however, is that — despite the challenges created by the patchwork of laws and regulations — consumer engagement in PHRs suffers when we focus too much attention on the legal issues surrounding privacy and security.

There’s no doubt that we need to deal with privacy and security concerns up front, but as long as the conversation focuses on data, it’s all about people’s fears. It’s not about value. Consumers don’t intrinsically care about data.

In contrast, consumers do care about tools that make it easier for them to accomplish specific health tasks for themselves and the people they love. If PHR certification, for example, continues to focus exclusively on privacy, security and interoperability rather than including attention to functionality, consumers have no reason to get into the PHR game.

Members of Kaiser Permanente or Group Health Cooperative and patients at Palo Alto Medical Foundation are using PHRs at rates probably 10 times the level of the general population. There are a lot of reasons for that, but one of the big ones is that those people have been provided with an opportunity to manage their health effectively through portals that connect them not only to their personal health data, but to Ix and related tools that help them manage their families’ health.

Building on my post last week about comparative effectiveness research (CER), there were three pieces in last week’s New England Journal of Medicine on CER. I thought that Jerry Avorn, MD, delivered the best summary statement on the debate that erupted in advance of ARRA funding of CER: “Given the quality and cost crises we face, preserving ignorance would have been a poor strategy for improving the effectiveness, safety, and affordability of health care.”

In “The Neglected Purpose of Comparative-Effectiveness Research,” Aanand Naik, MD, and Laura Petersen, MD, MPH, raise some important issues:

“Surprisingly little attention has been paid to what we believe is the most critical question facing CER: Will its results significantly improve the quality and safety of the health care received by the average patient? Policymakers and research funders, such as the National Institutes of Health, often assume that the final steps in the translation of clinical research — the decision to act on new medical evidence and its implementation in routine care — are seamless and automatic, whereas we know that changing the behavior of physicians and patients is difficult. Though we agree that the need for CER is clear, many of the assumptions regarding the most important aspect of such research — the ultimate implementation of its findings into health care — have little empirical support.”

Or, perhaps more directly to the point:

 ”These efforts suggest that some researchers and policymakers guiding the three tiers of evidence translation have come to understand that a shift is needed from the ’science of recommendation to a science of implementation.’ … We also need evidence-based methods for discovering and describing how the findings of clinical trials and CER can be efficiently implemented and incorporated into routine practice.”

Naik and Petersen are absolutely right. Building these insights into what I reported on last week, here are five guidelines for the evolution of CER:

1. CER is critically important to filling information gaps for clinicians and patients.
2. If we want to CER to truly help patients, they need to be at the table in CER design to identify priorities and ask research questions.
3. CER findings need to be broadly disseminated, including to consumers, which means that they need to be translated into a way that makes CER findings meaningful to consumers.
4. CER dissemination is not enough to ensure the consumer engagement in care that is so critical to better, more efficient health care.
5. We need to work just as hard (through both innovation design and scientific research) to develop creative strategies — like information therapy (Ix) — to ensure that CER findings are well integrated into the care delivery process in a way that supports shared decision making (SDM) and participatory medicine.

Any suggested additions, amendments, or comments?