The latest inside-the-Beltway, HIT version of “exciting” debate is now raging: What will constitute “meaningful use” for providers to qualify for HIT implementation incentives from the stimulus bill? The Center for Information Therapy (IxCenter) background on it can be found here.

Everybody, including new National HIT Coordinator David Blumenthal, has been talking about how the way in which “meaningful use” is defined by HHS will be a critical piece in determining how well it stimulates improved health care and greater systemic efficiency.

The National Committee on Vital & Health Statistics held a two-day hearing on the subject this week, causing many organizations to issue statements, including ones from the Consumer Partnership for eHealth (CPeH) and the Markle Foundation, to which the IxCenter signed on to both.

CPeH’s statement focuses on the key point that, “A fully patient-centered health care system will exhibit the following characteristics, all of which must be enabled and supported by the effective, meaningful use of HIT to improve patient outcomes:”

• Care is comprehensive, coordinated, personalized and planned
• Patients and their caregivers are full partners in their care, assisted with management of chronic illnesses and health care decision making
• Transitions between settings of care are smooth, safe, effective and efficient
• Patients can get care when and where they need it
• Patients’ experience of care is routinely assessed and improved
• Care is connected to and integrates community resources
• Continuous quality improvement and the elimination of disparities are a top priority

Moreover, the CPeH statement gets specific about how to leverage the “meaningful use” definition to drive a patient-centered delivery system. “Incentives must create a pathway toward this patient-centered system, beginning with rewarding the currently achievable goals such as effective medication management, improved coordination of care, and safer transitions between settings, while building steadily toward the achievement of every characteristic of the patient-centered system we all seek.  Essential mileposts include:

• Increasingly ambitious health improvement aims over time.
• The ability of consumers, patients, and their families to access their personal health information, receive prompts and reminders, and use patient decision support without sacrificing privacy.
• Flexible requirements that enable a broad range of providers and patients to benefit from new technologies.
• The ability of systems to capture both clinical and patient experience data to support more rigorous and robust quality measurement and improvement.

Markle’s key “Seven Principles for Meaningful Use and Qualification or Certification of EHRs” are as follows:

1. The overarching nationwide goals of health IT investments are to improve health care quality, reduce growth in costs, stimulate innovation, and protect privacy.
2. These goals can be achieved only through the effective use of information to support better decision-making and more effective care processes that improve health outcomes and reduce cost growth.
3. Meaningful use should be demonstrable in the first years of implementation (2011-12) without creating undue burden on clinicians and practices.
4. The definition of meaningful use should gradually expand to encompass more ambitious health improvement aims over time.
5. The definition of “qualified or certified EHR technology” should support the goals of meaningful use, security, and privacy.
6. Metrics for achieving meaningful use should account for the heterogeneity of the U.S. health sector and allow for a broad range of providers to participate.
7. Consumers, patients, and their families should benefit from health IT through improved access to personal health information without sacrificing their privacy.

To me, this seventh principle is where the rubber meets the road sky. As the Markle goes on to say about it, “ARRA clarifies the individual‘s right to request electronic copies of personal health information from EHRs for storage by information services of the individual‘s choosing. This should be considered a form of meaningful use toward helping people prevent illness, manage their health-related information and transactions, coordinate care and communicate with clinicians, understand health care costs, and take better care of loved ones.”

The Markle statement appropriately highlights patient access to clinically relevant electronic information.  It could further by clarifying that such information should be accessible to consumers in a way that they can understand and use it, and also that facilitates action on their part, or as CPeH puts it, “access their personal health information, receive prompts and reminders, and use patient decision support without sacrificing privacy.”

These patient-centered definitions of meaningful use are critically important for ensuring that ARRA HIT provisions actually change how health care is delivered in this country.

Sometimes our work life and home life collide…or at least it would be good if they did…

The Center for Information Therapy (IxCenter) has just submitted a grant proposal to NIH — part of the stimulus bill funding for comparative effectiveness research included requests for “information prescriptions” evaluations — in collaboration with Ix evangelist Kate Burke (an emergency physician) and some very progressive physical therapy (PT) practices in Massachusetts. The basic premise — and any athlete that has done PT to rehabilitate an orthopedic injury knows — is that physical therapists do great work, but ongoing improvement in orthopedic function often comes from the home exercise that the patient does on his/her own. And, equally importantly, it can be really hard to recreate those exercises at home based on oral instructions received or even text or a single picture.

The main Ix intervention in the proposal involves using Flip Video information prescriptions. The physical therapist uses the simple Flip camera to record that patient doing the PT exercise in the clinic and emails the video to the patient that day. I have grown fond of saying about this project: If a picture is worth a thousand words, a video is worth 10,000.

So that brings me home…  We’ve been monitoring my 5-year-old son, Ryan’s, asthma. Last spring (exactly this week), the spring pollen season triggered a reasonably severe asthmatic reaction (see Ix Gets Personal (Again)). He has since had one other bad asthmatic event, and a few consultations and allergy testing with a pediatric allergist. We developed a game plan for trying to prevent another April flare-up.

In many ways, we think our pediatric practice is great, but there are some things that it does not do well. For example, there’s no written (not to mention electronic) asthma action plan, so my wife and I sometimes have slightly different expectations of next steps.

In this case, most importantly, neither of us is a skilled practitioner in the use of an asthma inhaler. As a four-year-old, Ryan used a nebulizer (a clunky device, but one which is fairly straightforward to use), but the allergist trained us once (more than two months ago) in use of the asthma inhaler with spacer. We have no information beyond the package insert. I honestly don’t have a good recollection of the exact steps involved and — when I asked my wife how she did it last week when I was out of town — she confessed to not being too sure herself. And, little Ryan — despite his many talents — isn’t quite ready to teach his parents what to do.

Ryan’s breathing was strained this evening, and we eventually returned to the nebulizer to deliver his albuterol (rescue medication), but it’s not a very good solution. All I could think about was how perfect it would be if my pediatric allergist (or the medical assistant in his office) could have videotaped when he walked us through it step by step a couple of months ago. If he had then sent us this video information prescription via email, I’d be empowered to help my son manage his asthma effectively and efficiently.

It seems so easy, yet so far away…

I’m helping to facilitate (along with patient-centered care icon, Susan Edgman-Levitan, from the Mass General Stoeckle Center for Primary Care Innovation, and Eva Powell from the National Partnership for Women & Families) a breakout on consumer participatory engagement strategy at today’s Stakeholders Working Meeting of the Patient-Centered Primary Care Collaborative.

From past posts (see “Home Is Where the Health Is” and “Where Should the ‘Medical Home’ Be?”), people might get the sense that I’m feeling increasingly radicalized about the need to re-focus the patient-centered medical home (PCMH) model on the needs of the patient. Don’t get me wrong. I completely support the need to revitalize primary care, and shift reimbursement to support a whole person orientation to their patients. I just want to make sure that PCMH isn’t focused more on the needs of the physician than those of the patient — such as the emphasis on “physician-directed medical practice.” In the breakout session (as well as in some of the earlier sessions) there were others who voiced a similar concern.

The National Partnership for Women & Families has published some consumer perspective principles on medical home and HIT, which are helpful. I would add a few additional points to those well-designed principles.

• In a true PCMH model, clinicians support patients in managing their health throughout their daily lives.
• Health goals and priorities are defined by the patient with support from clinicians, family, and other caregivers.
• Regarding the HIT principle that, “Individuals should be able to access their personally identifiable health information
  conveniently and affordably,” we should add: “That information should be accessible in a way that that consumers can understand and use it, and that facilitates action.”

In the session before lunch, a panel focused on “engaging the consumer” as part of the PCMH model. Fan Tait, MD, from the American Academy of Pediatrics, says that “If it’s not patient-centered, it’s not a medical home.” The panel outlined a series of new resources available for engaging consumers.

Here are some interesting pieces from today’s meeting:

• Richard Antonelli, MD, MS, Medical Director for Boston’s Children’s Hospital Integrated Care Organization, shared some interesting data from their care coordination efforts: 32% of non-visit care coordination interactions prevented some reimbursable event.  Antonelli said, “It’s not sustainable.” He’s right.
• Suzanne Mitchell, MD, MSc, from Boston University School of Medicine, had some insightful comments for clinicians in thinking about how to structure the primary care encounter with their patients: “Be yourself; everyone else is taken,” and “Detached interaction is out; healing relationships are in.”
• Christine Sinsky, MD, from Dubuque, Iowa, has a nice architecture for facilitating integrated, continuous care. She says, on the day of a visit, they like to say, “The next appointment starts today.”
• Bob Doherty from the American College of Physicians says that the Senate Finance Committee is coming out with a 50-page document outlining payment reform options in the broader health care reform debate. That will include PCMH and other ways to align incentives for a more sensible reimbursement system.
• Shannah Koss asks the representative from the Centers for Medicare & Medicaid Services (CMS) why — given the primary care physician shortage — the Medicare PCMH demos require a physician-led practice. James Coan from CMS answers, “Because the legislation says so.” Of course, that doesn’t explain why the PCPCC and the PCMH coalition insist on it.
• David Nace, MD, Chief Medical Officer from McKesson, presents on the connections between HIT & PCMH. He emphasizes the new PCPCC document, “Meaningful Connections: A resource guide for using health IT to support the patient-centered medical home,” which includes a section that summarizes the report that we wrote for the California HealthCare Foundation titled, “Helping Patients Plug in: Lessons in the Adoption of Online Consumer Tools.” He also emphasizes that the HIT “meaningful use” definition must be created in a way that it leads to consumer engagement and access to health information. Nace argues that the question should be,”How do we empower consumers through the use of online tools?”

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.

For months, I’ve struggled with:

• Do I really have time in my life for one more expression of Ix personality via a new technology?
• Can I say anything of value in 140 characters or less?
• Is the Twittersphere providing any value to the world?
• Will tweeting distract or promote the advancement of Ix science or practice?

Just as my questions to start blogging couldn’t be answered by agonizing over the decision, I finally decided that the only way to find out was to start tweeting myself (jjseidman is my moniker for those who are interested).

During the IxCenter Board meeting, where some of the Board members — notably James Hereford and Alan Greene –  discussed how they had tweeted about/during the meeting, I started to think that it was time to give it a try.

With the first-ever “Health 2. 0 Meets Ix” conference just hours away, there’s no better time to try it out than now.

I generally don’t use this blog to share personal reflections, but since this year’s Boston Marathon happens to coincide with other Boston events — the IxCenter Board meeting and the first-ever Health 2.0 Meets Ix conference – I figured I could get away with it. I promise this marathon race report will be just a fraction of my typical step-by-step account.

To paraphrase Mark Twain, “The rumors about my demise have been greatly exaggerated.” I’ll admit…most of these rumors probably were started by me. For months, I’ve been complaining to those who would listen to me (mostly my wife) about my body just not responding to my workouts ever since I turned 40 last fall.

In any case, I lined up in Hopkinton for the start, knowing that my best marathoning days  were long behind me, and feeling that my training this winter had been inconsistent. But the weather was cool — even though I’d be facing a 15 mph headwind most of the way.

I had a little trouble holding back but eventually settled in and then got into a groove. I was trying to keep each mile between 7:10 and 7:15 to assure a sub-3:10 finish — a little hard on course like Boston with its rolling hills. The miles started clicking by and — just when I started to feel fatigue after the first 12 miles — the uplifting pass by Wellesley College was more rejuvenating than ever (just for the record, I didn’t answer any of the hundreds of signs offering “free kisses”).

I hit the halfway point in 1:33 flat. I began to wonder if I had pushed it a little too hard to early, but I kept the pace up through Wellesley and geared up for the four hills of Newton (miles 17-21). The first hill is the long, lonely one; it passes over the highway so the crowds are thin and it’s exposed to the elements — which, today, meant the cruel wind. I pushed over the summit and past the hospital to make the famous turn at the Newton firehouse and up hill #2, a bit shorter, but a bit steeper. My calves and quads began to complain here, but I fought the instinct to give in and continued to pass dozens of runner on the climb.

Mile 19 offers a brief respite, and I recouped, picked up the pace and geared up for the big push. By the 20th mile, I was beginning to sense that I had nailed my hydration and fueling needs because my body actually responded to the third Newton hill. That set me up for the notorious Heartbreak Hill — a half-mile stretch that typically confronts the runner just as he or she is hitting the proverbial wall. In this case, the wind was whipping in my face at this point, but I pushed through, crested Heartbreak and hit the mile marker in 7:23 (it would turn out to be my slowest mile of the day).

As I passed Boston College, I took advantage of gravity and ran 22 in 6:58. I kept hammering past my family just shy of Mile 23, where I grew up and continued to run strong through the rest of Brookline. When I reached the “Mile to Go” sign, I knew I could break 3:07 with a 7:10 final mile. I summoned whatever I had left down Comm Ave, up Hereford, and down the final long stretch on Boylston to hit the finish in 3:06:52 to record a second half just 52 seconds slower than the first.

It was my 13 Boston (12th consecutive) but my first as a “Master.” It was a good way to start the next phase of my running life.

Returning to Boston each April for Patriots’ Day has become something of a ritual for me. On Monday, I’ll be lining up on the starting line in Hopkinton for my 12th straight Boston Marathon (that would just be getting warmed up for the likes of Ben Beach, whose streak has been running 3 decades longer).

But this year, the marathon is just a warm-up for a more unique experience — the first-ever “Health 2.0 Meets Information Therapy” conference.  In the virtual spontaneous combustion that transpires in preparing for an event like this, it’s hard to step back and think about the big picture of the conference.  Finally, with the plane having returned to the gate for a maintenance check, I’m going to take a few minutes to put a few of these thoughts down here.

I owe a thank-you to Scott Shreeve, facilitator-extraoardinaire, for getting my mental juices flowing on this account. On Thursday night, he asked me and my two co-conveners (Matthew Holt & Indu Subaiya) what our vision was for the “Great Debate” he’s moderating on “Building Health 2.0 into the Delivery System.”  In a late-night frenzy, I typed (somewhat free associating) into the laptop my vision for the last session of the first day:

500 people will walk out into the cool Boston air, stroll through Back Bay with colleagues grappling with how Ix can help integrate Health 2.0 strategies into the delivery system. They should approach the question with a sense of realism of the challenges but optimism of the potential.  They should have new ideas that are ready to jumpstart a conversation with colleagues “back home.”  They should be ready to actually take action in changing how they deliver health care.

I’ll admit that’s a lot to ask for 90 minutes.  But I honestly think we have a shot at it — maybe not for everyone there because different people have different reasons for coming, but for enough that we can truly spark some game-changing momentum in health care delivery.

The world of patient-centered care, consumer engagement, patient empowerment, and robust new technologies are coming together at this point in history, and the potentially synergistic movements and communities of information therapy (Ix) and Health 2.0 are merging for two days in Boston to catalyze change.  It’s time to see what can happen.  Fasten your seat belts!

 The following is a guest post from Susannah Fox, Associate Director, Digital Strategy, at the Pew Internet & American Life Project. Susannah will be presenting and debating on the issue “Navigating the Health Care Delivery System (and Health Information)” at the first-ever “Health 2.0 Meets Information Therapy” Conference in Boston on April 22-23. This is part of a continuing series of blog entries cross-posted here, on The Health Care Blog, and the Health Affairs Blog, the conference’s Media Partner.

Participatory Democracy, Participatory Medicine

By Susannah Fox

More than half of the entire adult population in the U.S. used the internet to get involved in the 2008 political process. Blogs, social networking sites, video clips, and plain old email were all used to gather and share political information by what Lee Rainie has dubbed a new “participatory class”:

•    18% of internet users posted comments about the campaign on a blog or social networking site.
•    45% of internet users went online to watch a video related to the campaign.
•    Half of online political news consumers took advantage of the “long tail” of election coverage, visiting five or more types of online news sites.

And guess what? This participatory class of citizen is not ready to go back in the box. Many people expect to stay engaged with the Obama administration and you can bet that the rise of mobile applications will accelerate this trend toward engagement for lots of Americans.

My new survey data shows that not only is there a participatory class of citizen, but there is a participatory class of patient.

Most people with a health question want to consult a health professional – no news there. Second most popular choice: friends and family. Third choice: the internet and books (yes, books are still popular, even among internet users!).

But participatory patients (aka, e-patients) are using the internet in new ways. They not only gather information, but seek out expert opinions, such as the “just in time someone like me” who holds the key to their situation. This participatory class is reading blogs, listening to podcasts, updating their social network profile, watching videos, and posting comments. Technology is not an end, but a means to accelerate the pace of discovery, widen social networks, and sharpen the questions someone might ask when they do get to talk to a health professional.

GenY and GenX internet users are the most likely groups to be turning up the network volume in health care, but I’m betting that no e-patient of any age is going back in the box.