At the eHealth Initiative (eHI) Government Affairs Retreat yesterday, aside from the obvious enthusiasm at the passage of the health information technology (HIT) provisions of the American Recovery & Reinvestment Act (ARRA), there were some cautionary notes sounded as well.

In particular, one could now say that, in a sense, the HIT world is (at least partially) “on the hook” for system-wide quality improvement and cost containment. If five years and tens of billions of dollars down the road, HIT has been broadly implemented across the country but cost escalation continues at the same pace and/or the U.S. still ranks around 37th among industrialized nations in quality, what will policy makers and researchers conclude about investment in HIT?

One of the conclusions from the retreat was that part of making sure we get substantial delivery system improvements is figuring out how to engage consumers in productive use of HIT.  “Engaging consumers” was one of the top three priority areas identified by the dozens of eHI members in attendance (along with privacy and standards).

One place to start is the eHI Blueprint from 2007 that outlines a series of strategies and actions for consumer engagement and cross-walking that to ARRA HIT provisions. That will give us a start, and there are other specific ways we can build on those ideas. There are elements of ARRA’s research centers, extensions centers, health information exchange guidance, committees and mandate for consumer access to electronic health records that provide opportunities for more effective consumer engagement in HIT.

• Conducting focus groups and structured interviews with consumers to better understand where HIT can serve their health needs
• Ensuring that clinical and administrative data sources are translated into meaningful, usable, actionable information for consumers/patients
• Designing content, tools & interfaces to support different consumer health needs
• Creating tool kits for consumer outreach
• Devising strategies to engage clinicians as advocates for shared use of HIT tools with their patients

If the Policy and Standards Committees and HHS emphasize these kinds of efforts, it will go a long way toward ensuring that five years down the road we have something positive to show for our big gamble on HIT.

A new study confirms the importance of proactive delivery of information therapy (Ix) to consumers in order to improve early detection of cancer. “Patient and Physician Reminders to Promote Colon Cancer Screening,” published in the February 23 edition of Archives of Internal Medicine demonstrated that timely education delivered to patients improved screening rates better than messaging to physicians.

The study was conducted by new IxAction Alliance member Harvard Vanguard Medical Associates (HVMA) and Harvard Medical School and actually had four arms — intervention and control groups for both patients and physicians. For the former, HVMA patients overdue for colorectal cancer screening and randomized to the intervention group received a mailing with four components (and a second mailing six months later if still not screened).

1. Cover letter from HVMA CMO with most recent screening dates and note about being overdue
2. Educational pamphlet detailing screening options
3. Kit for fecal occult blood testing (FOBT)
4. Dedicated phone line to schedule colonoscopy or flexible sigmoidoscopy

HVMA educated all physicians prior to the intervention in a one-hour presentation and discussion at each HVMA clinic. Physicians randomized to the other intervention group received both active and passive electronic reminders for office visits with their patients overdue. Alerts provided one-click electronic ordering for screenings.

Researchers found a significant increase in screening (44% vs. 38%; p<.001) for the Ix approach (patient intervention group) but not for the physician reminders. There was a particularly large impact among the oldest (most at-risk) cohort; 70-80-year-old screening rates rose more than 10 percentage points (37.3% baseline increased to 47.4%).

This research reinforces what we know from much past research (for example, you can download the white paper, “The Ix Evidence Base: Using Information Therapy to Cross the Quality Chasm”): To improve quality and cost-effectiveness of care, the delivery system needs to provide timely information directly to consumers that stimulates healthy behaviors. This can have a profound impact. A 2006 study in the journal Cancer estimated that increasing screening rates to 70% could reduce colorectal cancer mortality by 23%.

Although HVMA demonstrated that its Ix intervention had a substantial impact, there clearly remains plenty of room for improvement. Even with the sound intervention strategy HVMA employed, other enhancements (some of which HVMA probably has implemented to some degree since the intervention was launched almost three years ago) could improve screening rates further. The Ix intervention could be more tailored to patients’ individual needs and circumstances by (just a few examples):

• Tailoring to individuals’ specific reasons for not getting screened (for example, what stage of behavior change they’re at — e.g., pre-contemplation, contemplation, preparation, etc.)
• Offering information/reminders via electronic, automated phone, and other media as well as via print/mail
• Providing a direct hyperlink from the electronic Ix directly to: an online scheduling of screening; and/or link to send a secure message to their primary care providers

It’s imperative that lessons from research such as this study help shape HHS’s implementation of the HIT provisions of the American Recovery & Reinvestment Act and Congress’s details of health care reform legislation. In both cases, it’s clear that engaging and activating consumers needs to be embedded into a redesigned delivery system.

For all the concerns about the botched HHS secretary nomination, a lack of leadership at various parts of HHS, and a variety of other criticisms, when you look at the results, the groundwork toward comprehensive health care reform has been fairly impressive.

President Obama has already accomplished several foundational elements of health care reform.

• Signed into law re-authorization of the State Children’s Health Insurance Program (SCHIP) that will expand coverage to an additional four million children.
• As part of the American Recovery & Reinvestment Act (ARRA), dramatically expanded the funding and infrastructure to promote an interconnected health information technology (HIT) infrastructure.
• Provided enormous support to state Medicaid programs (also through ARRA), without which there would have been a dramatic increase in the uninsured, which would have made the reform task seem all the more insurmountable.
• Kept in touch with Senate efforts to build broad-based, multi-stakeholder support for key issues in health care reform without the White House trying to drive the process.

Not bad for less than five weeks on the job.  And I am sure that much else is also going on well beneath the surface that’s laying further groundwork toward comprehensive health care reform.

I hope that part of that foundation laying includes some in-depth analysis about what it means to get patients/consumers engaged in managing their health. What’s critical here is to ensure that principles such as patient-centered care get translated into policies that actually help to deliver that.

For example, the ARRA HIT provisions note that one of the key purposes of the legislation is that it “advances the delivery of patient-centered care,” though the legislation was somewhat thin regarding how that could be accomplished (for more specifics, see “Getting the Most for Health Consumers Out of Health Stimulus Bill”). That doesn’t at all mean that those opportunities no longer exist; indeed, many decisions will need to be made over the next 10 months by the new HIT Policy Committee and HHS staff that could really help to address consumer needs with respect to HIT.

If the Obama administration is thinking through these issues on the front end — e.g., how to promote shared decision making, chronic care self-management, use of understandable and meaningful personal health records, etc. — the payoff in results could be huge.

“Drugs don’t work in patients who don’t take them.” So said former U.S. Surgeon General C. Everett Koop, MD. Back to something I wrote last week on this blog, sometimes a statement obvious on its face can be profound.

The question, of course, is: Why? Why do people take only about half of the medications that they should to help them prevent disease, recuperate from acute illness, and manage chronic conditions? Why do an estimated 125,000 people die every in the U.S. because of medication non-adherence? And what could we do with the $100 billion our country will spend in 2009 because of this problem?

There’s no shortage of research to help us answer these questions, one of the best sources being the Cochrane Collaboration review on “Interventions for enhancing medication adherence.” In fact, many information therapy (Ix) interventions have proven at least somewhat successful; Ix has been a critical component of the successful interventions below.

• Targeted information
• Timely reminders
• Self-monitoring
• Reinforcement
• Counseling

I attended a stakeholder meeting today convened by the National Consumers League regarding a proposed national medication adherence campaign. One of the big issues that arose is the degree to which a public relations campaign designed to raise consumer awareness can lead to substantial increases in medication adherence.

Although awareness certainly is an important precursor, it may be the easiest step in the pathway that takes the average consumer along the road to information consumption, then knowledge accumulation, and ultimately leading to behavior change. We know there’s a large body of research that tells us that, in order to be successful, our Ix initiatives need to “meet people where they are.” More specifically, we need to target the information to the individual’s particular moment in care and tailor it to their particular needs and circumstances.

With that in mind, the Center for Information Therapy will soon embark on a new body of work around “Ix for Rx Management.” The goal will be to summarize research — on the problem but even more so about the solutions — then stimulate innovation and diffuse best practices.

Although medication adherence is one of the top issues, we will also explore other Rx management issues to address medication safety, poly-pharmacy, and other issues. Over the next few weeks, we will roll out more details on our plans in this arena, and I urge those interested in our work to get in touch with us.

Today’s New York Times published an editorial in support of the Zagat-WellPoint consumer survey of physicians that I wrote about yesterday.

The Times highlighted some of the themes I touched on in my post. I thought the meat of it was in the following paragraph:

“Who knows better than patients whether they have confidence in a doctor? Whether they like his or her bedside manner? Or find it easy or hard to make appointments? Or are dealt with on time or kept waiting for hours? Or find the staff helpful? These are the kinds of items covered in the Zagat/WellPoint survey, not anything to do with the quality of medical care provided.”

I only take issue with the semantics in the last sentence. After all, it has a lot to do with the quality of care. For example, physician-patient communication certainly has an impact on care quality. Perhaps they felt that use of “medical” as a modifier was enough, but I would have preferred something more along the lines of “clinical competence.”

Milt Freudenheim of The New York Times wrote an article about the new partnership between Zagat and WellPoint to publish consumer ratings of physicians. Not surprisingly, it included many complaints from doctors about the inadequacy of physician performance measurement.

I haven’t had the opportunity to spend much time with the Zagat-WellPoint consumer ratings (primarily because they aren’t making them publicly available), so I can’t go into detail on their methodological approach, but I give them credit for four things. First, we need to push the envelope on performance measurement, so more experimentation is generally a good thing.

Second, existing physician measurement approaches have been inadequate, particularly as the unit of analysis gets smaller and smaller (e.g., measuring individual doctor performance). By approaching the question of “what is a good doctor?” from multiple angles, we’re more likely to get a better answer.

Third, one of those angles definitely should be, “what do patients think of their care experience with their doctors?” Asking consumers is a good way to answer that question.

Fourth, one of the frustrations with those of us who have spent time developing performance measures is that consumers rarely use them. In contrast, a trusted consumer brand like Zagat or Consumer Reports might just get traction with consumers.

With respect to #2, clinicians have frequently (and often correctly) pointed out the shortcomings of most existing evaluations of their clinical performance. Particularly as you try to assess individual clinicians, the problems of small numbers and risk adjustment make it difficult to measure robustly, reliably and validly.

Given those challenges, it would seem to make sense for third parties to evaluate them on things that are easier to measure and also go to the heart of the clinician-patient relationship and the goals of participatory medicine — namely trust and communication. That’s at least what the NYT article claims Zagat and WellPoint are measuring.

While the clinicians quoted in the article are correct that these criteria are somewhat subjective, if we can get large enough and random enough consumer samples, subjectivity does not render the measurement invalid.

Although it’s unlikely that a new service like this is either yet (big enough or random enough), that doesn’t mean it can’t get there. Hopefully, before long, Zagat and WellPoint will open their black box and let clinicians and the rest of us in to look at their methodology so that their claims can be verified.

At that point, we might have a useful new tool for assessing one important domain of clinician performance, and can pair that with other ways of examining it that better evaluate their clinical competencies. The more ways we have for answering the question, “Is this a good doctor?” the more likely we are to get a reliable, valid and robust answer.

Sometimes the greatest insights derive from the most obvious observations. Especially when they’re delivered by an articulate spokesperson, who speaks plainly from both data and his own experience. A presentation from California HealthCare Foundation President Mark Smith, MD, MBA, — available for viewing here — had some real gems.

The presentation, “Clinic of the Future: Will Yours Be One?” was directed at community health center clinicians and administrators, but many of his points apply to a broad spectrum of clinical practices. (You can also find the slides here.)

Smith shares examples of what some of the future of health care could look like but recognizes that most of clinical practice hasn’t changed since he was a resident a couple of decades ago. He asked the audience, “For those of you older than 30, what do you do even remotely like you did in 1990?” In other words, the tools we use to communicate, schedule trips, shop and do just about everything else are different than from that era, but most of health care delivery looks just about the same. No doubt there’s something wrong with this picture.

He got even more specific with respect to information therapy (Ix), again with a question that is not exactly groundbreaking and could be a guide for the future of health care delivery: “Why do most people go to the doctor’s office?  For information.  Do we get information the same way we used to? No, we do not.” But, he notes, the democratization of information has not substantially changed how most doctors practice today.

Smith talked through some examples of trying to create more consumer-centered approaches to organizing care and information. For example, for Minute Clinic, he dispensed with clinician concerns that consumers would take serious health problems or medical emergencies to walk-in clinics: “Patients aren’t that dumb; patients aren’t going to Wal-Mart if they’re having a heart attack.” He cited data in support of this as well.

Smith noted that these new health care organizations and online resources are specialized by level of severity, not by organ systems. That allows them to effectively “orient the intensity of their interventions to their patients’ needs.”

I’m vaguely reminded of some product tag line from many years ago (I can’t remember what it was for), “So smart it’s simple.” Sometimes all this health care redesign stuff seems like it shouldn’t be so complicated.

Jessie Gruman, PhD, recently published an excellent collection of essays related to health behavior research. In less than 100 pages, Gruman draws from much of her work from the 15+ years she has led the Center for the Advancement of Health.

Behavior Matters is a treasure trove of insights for all who (in Gruman’s words) “believe that we will not solve the health problems of our time without systematically addressing health behavior.” The list of chapters (each is a very readable essay rather than a dense academic treatise) demonstrates the varied but connected themes worthy of exploration as we think about how to engage consumers/patients/people in any reformed health care delivery system.

1. Why Study Health Behavior Now?
2. Dilemmas of Progress for Health Behavior Research
3. Is Health Promotion for Older Adults Just Nice or Really Necessary?
4. Are We Really “Consumers” of Health and Health Care?
5. Prevention Deficit Disorder: When Politics and Science Collide
6. Promises and Pitfalls on the Way to Transforming Consumer Health Decision-Making
7. How Science and the Media Undermine Behavior Change
8. Improving Health: Is Clinical Medicine Up to the Task?
9. Follow the Money: What Health Behavior Professionals Need to Know about Foundation Funding
10. The Mutual Obligations of Scientists and Society

Chapter 6 is based on a keynote address Gruman delivered at one of our information therapy (Ix) conferences. The entire collection is well worth your time, but if you’re still not sure, the best way to get started is to read Gruman’s “About This Book,” which succinctly summarizes each essay.

The proposed $20 billion health information technology (HIT) infusion in the economic stimulus package that passed the House last week and is set to pass the Senate today has the potential to dramatically accelerate a critical piece of health care delivery system infrastructure. [Note: Where I’m quoting in this post, it’s from the House language–see link above, and HIT portion begins on page 395.]

The bill makes clear that a key “purpose” of the bill is that the HIT stimulus “advances the delivery of patient-centered care” (p. 402). So the bill’s authors clearly recognize the importance of focusing on the health needs of consumers/patients to maximize the impact of this huge investment. Eva Powell’s guest post here on Friday outlined some important, practical issues about the bill’s privacy provisions, so I’ll move on here to a few examples surrounding the effective deployment of consumer tools and information.

It’s important that when HHS does its “update of the Federal Health IT Strategic Plan” that it not just “foster the public understanding” (p. 406) of HIT, but that it also develop strategies to better understand consumers’ health information needs to ensure that HIT evolution actually addresses those needs directly and comprehensively.

The bill references various bodies that will promote HIT evolution in various ways, such as the HIT Policy Committee (p. 416), the Health Care Information Enterprise Integration Research Centers (p. 437), and the Health Information Technology Research Center (p. 445). In all cases, there should be emphasis on providing technical assistance and promoting technologies, content and best practices that facilitate proactive delivery of timely information to consumers. These should help to translate clinical and administrative data into understandable, usable, meaningful information for consumers that is presented in plain language text, graphics, audio and video.

Perhaps even more important than the actual legislative language itself is how HHS (especially in the Office of the National Coordinator for HIT) goes about implementing it once signed into law. The pressing implementation timetable — a reality caused by both the urgent need for economic recovery and the dismal state of the country’s HIT infrastructure — will make it difficult for these details to stay top of mind for HHS. But it’s imperative that HHS not lose sight of consumers’ real health care and health information needs if it wants this HIT capital investment to lay the groundwork for an effective overhaul of the health care delivery system.

The following is a guest post from Eva Powell, MSW, CPHQ, Diretor, HIT Project, National Partnership for Women & Families. 

In light of all the discussion about the Economic Recovery Plan and the privacy provisions in the HIT Title, I thought it might be helpful to provide a consumer advocate’s view.  The National Partnership for Women & Families leads a coalition of consumer, patient, and labor groups, the Consumer Partnership for eHealth (CPeH).  The organizations in this coalition are working to advance HIT adoption, because we know that achieving better coordinated, higher quality health care demands the integration of new technologies into the health care delivery system. Josh’s post earlier today about the Medical Home model is a good example of the potential these new technologies present, especially in terms of engaging patients in their own care.  However, we also know that HIT is a tool, and that like any tool, it must be used properly to be most effective.  Consumer and patient advocates view the privacy issue as part of the framework required for effective use of HIT.  If patients and providers are going to trust the information managed and exchanged in an electronic environment, there have to be clear rules that apply to everyone who has access to the information.  At the same time, if those rules are designed in such a way that those who have a legitimate need to access this information are prevented from obtaining it in a timely way, the benefits of electronic exchange of information will never be fully realized.

Whether one is a patient advocate or a “privacy” advocate, we can all agree that having to choose between privacy protections and appropriate flow of information is a false choice; the technology itself makes it possible to do both.  But in order to get there, we must first agree on policies that can guide the development of technology according to a framework approach to privacy that also allows information to flow when and where it is needed in a timely fashion. Moving forward with policies that speed adoption while “putting off” dealing with privacy, at best, will make these issues even more difficult to resolve in the future, since we will at that point be limited by the capacity of whatever technology is developed without privacy policies in mind. At worst, it will be the first step toward never getting around to addressing privacy, thus limiting trust in the system, and, as a result, also its usefulness.

Years of discussing how best to approach the privacy issues in HIT and HIE, and many attempts to write legislation haven’t yielded many solutions.  Previous attempts either seemed to be mere tinkering that didn’t result in meaningful protection, or seemed to be overreaching attempts likely to create unintended barriers to safe and effective health care.  Finally, consumer advocates and privacy advocates feel that the privacy provisions included in the House version of the Economic recovery bill offer a solid start for addressing privacy issues in an electronic health care environment.  These provisions lay an important foundation for building a framework of privacy protections according to the Consumer Principles developed by the CPeH in 2006.  This foundation includes:

1) Closing a loophole in the HIPAA Privacy Rule that allows direct marketing to individuals using their personal health information without their knowledge or permission.
2) Giving patients the right to be notified if their personal health information is breached.
3) Requiring providers to account for disclosures of personally identifiable health information so that individuals and organizations can be held accountable in the event of a breach of information.
4) Giving patients the right to obtain an electronic copy of their health information for a reasonable cost.
5) Improving enforcement of privacy violations.

At the same time, the provisions leave many specifics to the Secretary to decide, which provides opportunity to ensure that those specifics don’t result in unintended consequences that would negatively impact the quality or safety of care.

As mentioned in TheHealthCareBlog on Tuesday of this week, many in industry are not pleased with these provisions.  The National Partnership has addressed the most common complaints in our recently-released fact sheet, found here.  The lingering question about health reform is one of will: amidst all the discussion about reform and indications of a unique opportunity to make innovative changes, is there actually a will on the part of all stakeholders to do what’s in the best interest of achieving better health and health care, or will we continue to cling to the interests that have prevented positive change in the past? Perhaps the issue of privacy protections in the stimulus bill is the first test of our collective will.