The Center for Information Therapy has been working with the U.S. Department of Health & Human Services (HHS) for two years to develop a Healthy People 2020 Ix objective, as part of the HHS’s efforts to update and improve its health communication & HIT objectives for the next decade. We are pleased to report that the following objective has been released for public comment, the last stage of the process.

HC/HIT HP 2020–8: Increase the proportion of patients whose doctor recommends personalized health information resources to help them manage their health.

In addition, other Ix-related objectives are included in this section, including:

HC/HIT HP2020–6: Increase the proportion of persons who report that their health care providers always involved them in decisions about their health care as much as they wanted.

HC/HIT HP2020–7: Increase the proportion of persons who use electronic personal health management tools.

The public comment period is now open, and it is a great opportunity to voice your opinion about what should be the country’s public health objectives for the next decade.

At the request of Neil Calman, I had the opportunity to speak in Albany last week at the New York State AHEC (Area Health Education Center) System Advisory Board meeting on “Health Care Reform & the Health Information Technology Workforce.” The trip was well worthwhile for many reasons, certainly not the least of which being the chance to soak up more wisdom from Neil Calman, MD, CEO of IxAction Alliance member, the Institute for Family Health (IFH).

Neil — a member of the Health Information Technology (HIT) Policy Committee advising HHS on the implementation of HIT provisions in the American Recovery & Reinvestment Act — set up the discussion about the all-important definition of “meaningful use” of electronic health records (which will determine whether physicians are rewarded with incentives for HIT adoption). As others have stated, Neil made clear that “It’s not about the technology.” Rather, he said, “It’s about the handshake between HIT and health care reform.”

Neil then proceeded to give a great example from his own delivery system of the difference between HIT implementation and meaningful use of HIT. When IFH implemented its EHR in 2002, it experienced no improvement in the rate at which its older patients got a pneumonia vaccination. However, IFH added an electronic reminder system to its EHR in November 2003, which produced an immediate and sustained spike in vaccination rates that continues to hover around 80%.

Neil discussed other examples of meaningful use and highlighted that what it’s really about is changing the way clinicians practice. Although many clinicians bemoan the transition from handwritten, paper progress notes to electronic notes available for the patient to review, Neil emphasized that this modern form of documentation can produce important improvements in care delivery. This transparency (an important goal by itself) does much more than just create an environment of participatory medicine for its own sake.

Neil pointed out, “When you change what you write in progress notes,” to make them appropriate for your patients’ consumption, “you drill down further to the real reason” for sub-optimal care. In the past when a patient wasn’t taking a new medicine, an IFH clinician may have just written in the progress notes, “Patient non-compliant.” But such a statement obviously begs the question: Why? So the doctor now will ask, and the answer often provides important direction for improved care delivery: “Patient took first 2 pills and they made him sick.” Now, the clinician and patient know what they need to discuss in order to improve adherence to a medication regimen.

That’s what meaningful use is all about. Taking apart HIT, we’re not just changing the T (technology), but actually fundamentally changing the I (information) in order to improve H (health).

During yesterday’s meeting of the Health Information Technology (HIT) Policy Committee, there was a critical missing component of an otherwise excellent presentation by Deven McGraw and Micky Tripathi, C0-Chairs of the Health Information Exchange (HIE) Workgroup. Committee members Adam Clark (from the Lance Armstrong Foundation) and Neil Calman (from IxAction Alliance member the Institute for Family Health) brought up the critically important question: Where is the patient in all these diagrams about the exchange of health information?

After Clark first pointed out the oversight, Calman framed a few relevant important questions:

• Where’s the place on the diagrams (explaining the transmission and exchange of data among systems) that patients plug into?
• How do you create a meaningful view into the data that are being passed around?
• What should those views contain?

McGraw and Tripathi had an enormous task in trying to lay the groundwork for a discussion about the relationship between HIE and meaningful use of HIT. But without attention to consumer needs for health information up front, even successful technical transmission of data from one entity to another may not lead to effective exchange of information that is meaningful to the end-users (most notably clinicians and patients).

Charles Kennedy (from WellPoint) built further on this issue: If we just connect data from System A to System B, it will produce data that is basically just transactional in nature, which doesn’t provide useful decision support to clinicians and patients. In order to create meaningful information for end-users, we need some sort of data infrastructure.

Kennedy, Clark and Calman have circled in on one of the most pressing issues in HIE. A few years back, I wrote an Issue Brief for the California HealthCare Foundation called, “Lost in Translation: Consumer Health Information in an Interoperable World.” The idea is basically to think about what HIE infrastructure looks like when you start from the user-centered design perspective. That is, we should begin by asking questions about what meaningful information do clinicians and patients need to manage care better and more efficiently, and then come up with the technical infrastructure that supports exchange of that information.

If we don’t approach HIE that way, we’ll end up with enormous investment of resources to produce data that doesn’t facilitate substantially better or more efficient care.

David Leonhardt had a great piece in last Wednesday’s New York Times titled, “In Health Reform, a Cancer Offers an Acid Test.” Leonhardt makes the argument that the most fundamental issue for health care reform is whether it addresses “the combination of soaring costs and mediocre results” and the litmus test for that question can be found in how the country addresses prostate cancer treatment.

Leonhardt has identified a great example of where we spend vastly different amounts of money on treatments that produce, on average, similar outcomes. There also is tremendous variation in rates of prostate cancer procedures that has been dictated much more by physician practice patterns than by patient values and preferences.

I accept Leonhardt’s litmus test, but I would offer a few friendly amendments in evaluating how health care reform might pass the test.

We want to be sure not to confuse “on average” similar outcomes with the right decision for all patients. Clinical outcomes will vary based on many factors. One reason why Leonhardt is right that prostate cancer is a good focus is because it typically progresses slowly, which makes the “watchful waiting” strategy effective in many cases. In some cases, that watchful waiting will transition to more aggressive treatment based on a range of factors. Improvements in genomics may also allow clinicians and patients to evaluate treatment options with more precise data about the consequences of pursuing different options.

It’s also critically important that clinical outcomes not be the only factor in dictating treatment choices. Sometimes even the best comparative effectiveness research (CER) won’t tell us which treatment is best for everyone. Rather, through shared decision making (SDM), we need to provide consumers with the information that allows them to make informed decisions (in consultation with their families and clinicians) that takes into account their own values and preferences. Prostate conditions are good examples because there are trade-offs (are you more concerned about absolute prevention of mortality, symptom relief, or potential negative side effects?), for which there is no “right” answer.

I know that Leonhardt probably faced space constraints, but another reason why prostate cancer is such a good litmus test is that the testing itself is controversial. PSA testing may not be appropriate for everyone (clinicians and patients should discuss whether to get a PSA (prostate-specific antigen) done before a doctor orders the test). The big expense may be more in all the downstream testing (biopsies, etc.) and unnecessary treatment and worrying it causes rather than the PSA testing itself.

Then the question is: How do you actually change care delivery patterns? We need to develop good decision aid tools and figure out how to get clinicians and patients to use them. No doubt some of that is a matter of financial incentives.  But perhaps just as importantly, we need to create compelling strategies for integrating decision aids into the clinical workflow to make it easier for clinicians to prescribe these tools. Then we need to deploy effective strategies for getting tools used by consumers (see the new research by the Center for Advancing Health).

Some skeptics will say that there’s no way we can make significant progress on these critical delivery system issues while the politics over public plans and paying for expanded coverage are threatening the viability of passing anything. On the other hand, common-sense, money-saving solutions might actually be one way out.

One possibility for how comprehensive health care care reform can pass Leonhardt’s litmus test is if the legislation includes the key components from S. 1133, introduced by Senators Wyden and Gregg. The Empowering Medicare Patient Choices Act would 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. The consulting firm Lewin has estimated significant financial savings, and it’s clear it will result in better, more patient-centered care as well.

The following is a guest post from Dorothy Jeffress, Executive Director of the Center for Advancing Health, an IxAction Alliance member.

It is an exciting time for those who support information therapy (Ix).  It seems that current health policy/reform discussions on Capitol Hill and around the Beltway are frequently touching on the need to incorporate strategies for enhanced patient engagement through targeted health information and integration of shared decision aids for example. But much of the future success of these new policies lies ultimately in the hands of consumers.  So as forward thinking as requirements for meaningful use in HIT roll-out might be, all of this recent rhetoric seems to overlook the fact that few consumers currently make use of available tools for selecting health plans, hospitals or physicians.   In fact at the Center for Advancing Health, we have noticed that few consumers are actually crying out for the responsibility of making more decisions about their health and health care.

Why do so many of us abandon the familiar role of savvy consumer when making decisions about our health care, and instead choose our health plan on the basis of its ads or the hospital recommended by the woman behind us in the 7-11 checkout line?

This question is the basis of a research report called “Getting Tools Used” issued in June by the Center for Advancing Health.  The aim was to learn from successful decision support tools outside of health care how to increase people’s use of tools to make decisions within health care.  Detailed case studies of four successful non-health-related tools were developed: Consumer Reports: Car Buying Guide; eBay; US News & World Report: America’s Best Colleges, and the FDA’s federally mandated Nutrition Facts Panels (NFP).  Five experts in health-related decision aids commented on the keys to their success and the implications for tools relevant to choices in health care.

The findings were clear:

• The successful tools all come from a trustworthy, objective source
• Their content is tailored to the interests of the audience
• Each tool is targeted to the users’ capabilities
• All of them are highly visible and readily available nationwide.

Implications of these findings for sponsors of health care decision aids can be found on the CFAH Website. For the rest of us, however, the critical issue is this:  Our indifference to health-related decision aids is not trivial.  Health care has never been more complicated.  We are more responsible for making more decisions about our care than ever before.  And the stakes of our decisions have never been so high.  But there is simply no way we can make well informed decisions without relying on objective information that is arrayed so that we can understand and weigh the trade-offs of our options.  Increasingly, being able to find safe, decent health care depends on our ability to locate trustworthy tools when we need them — and then to use them to help us make the choices that meet our needs and preferences.

We need better tools, yes.  But we also must recognize that to realize their benefit, we have to use them.

Molly Coye (CEO of the Health Technology Center) and Joe Kvedar (Director of Partners’ Center for Connected Health) made a compelling argument for patient-centric health care reform on the Health Affairs Blog yesterday. Coye & Kvedar effectively articulate the rationale and importance of ensuring that our best shot at health care reform in many years improves the care delivery system by focusing on consumers’ health and health care needs. What would have made the piece even more helpful is if they tied that argument more directly to what’s actually going on in Washington, both on the legislative front and in implementation of the American Recovery & Reinvestment Act (ARRA).

Coye  & Kvedar “propose adding two synergistic goals to the policy conversation:

1. Support people in taking shared responsibility for their health outcomes, and make tools available to help them.
2. Pay providers for success in supporting patient self-management, and for preventing the onset or exacerbation of disease, rather than for units of service.”

I completely agree. Although many policy leaders still don’t understand these important points, it’s important to identify where progress has been made and think about how to build on those efforts.

For example, in the implementation of ARRA, the first draft definition of “meaningful use” of health information technology (HIT) includes several patient-centric expectations in order for providers to be rewarded the tens of billions of dollars in incentives in ARRA offers for HIT implementation. If implemented (and strengthened modestly), this approach could have a significant impact on achieving (in Coye/Kvedar’s words) “important transformation of the care delivery process itself, so that patients are fully integrated and in many cases manage their care for prolonged periods with little interface with the physician.”

ARRA also allocated $1.1 billion for comparative effectiveness research (CER). If the CER agenda evolves with five consumer-oriented principles in mind, it has the potential to dramatically improve care delivery effectiveness by providing useful information to consumers and clinicians. The release of the Institute of Medicine’s top 100 priorities for CER provides at least some indication that CER leaders recognize the importance of using these resources to advance patient-centered care.

Although most of the media attention and public debate around health care reform legislation has focused on ideological issues, there is quieter, important work going on with respect to delivery system reform that could pave the way for more patient-centered care delivery. If, for example, the Wyden-Gregg patient decision aids legislation gets integrated into the broader reform bill (and legislators can overcome their ideological divisions and pass something), that could be an important step in the direction of a more rational payment system that encourages information therapy (Ix) — patient-centered care, shared decision making, and participatory medicine. Other important delivery system reforms could be integrated into the final legislation, and I completely agree with Coye & Kvedar that we need to “wrap these concepts [and what they call ‘patient-provider communications tools’] into the implementation of the patient-centered medical home projects and demonstrations.”

It’s important that industry leaders like Coye and Kvedar continue to advocate for achieving patient-centric health care reform. It’s equally critical that we collectively identify practical strategies for integrating those arguments into the development of new bills and the implementation of recently passed legislation.

The Senate Health Education, Labor & Pensions (HELP) Committee released its piece of the comprehensive health care reform bill on June 9. Despite being 615 pages long, several key provisions of any health care reform legislation are not in the HELP Committee bill because they are issues that fall under the jurisdiction of the Finance Committee. Most of the issues related to Medicare, Medicaid, other public options, and taxes (basically how to pay for expanded coverage) will be proposed in the Finance bill, likely coming out next week.

But HELP is first to the table, and may start marking up this bill as early Tuesday, June 16. So it’s worth looking at the bill and asking: What key features of it facilitate more patient-centered health care delivery?

Perhaps most importantly, the provisions of the Wyden-Gregg “Empowering Medicare Patient Choices Act” (see here for overview) that fall under the jurisdiction of HELP are included in Sec. 217, Program to Facilitate Shared Decision-Making (pp. 301-311). Much of the meat of this bill (Medicare carrots and sticks) comes under the jurisdiction of the Finance Committee, but this is a critically important start.

Sec. 212. Grants to Establish Community Health Teams to Support a Medical Home Model provides several opportunities for driving patient-centered care delivery and the provision of information therapy (Ix), though much will depend on how it is implemented. Opportunities include emphasis on “payment that recognizes added value to patient in a patient-centered care; [sic]” (a few typos aren’t surprising when those Hill staffers are working round-the-clock these days). There is also a recognition that support should be provided to PCPs to “provide quality-driven, cost-effective, culturally appropriate, and patient- and family-centered health care” and “promote effective strategies for treatment planning…sharing information, treatment decision support…”

The role of Ix in patient-centered discharge planning and reducing readmissions is highlighted in both the medical home section and in Sec. 216. Reducing and Reporting Hospital Readmissions (see here for discussion of Ix role in this area). Ix and patient-centered HIT are also an important part of the solution for Sec. 213. Grants to Implement Medication Management Services in Treatment of Chronic Disease.

Admittedly, I haven’t finished all 615 pages, so I’ll probably find more in here over the weekend. If you think I’ve missed answers to my question (What key features of it facilitate more patient-centered health care delivery?), please add in the Comments section.

For the past several months, the Center for Information Therapy (IxCenter) has been working alongside other consumer advocates to guide the HHS definition of “meaningful use” of EHRs to include consumer access to meaningful information. Part of that collaboration has been with the Consumer Partnership for eHealth (CPeH), which has brought together many organizations dedicated to advancing a patient-centered care delivery system. We also believe it’s important to build a meaningful use definition off of robust definitions of patient-centered care, such as that proposed recently by Don Berwick.

With the decisions on meaningful use now being hammered out by the Office of the National Coordinator (ONC) for HIT with input from the HIT Policy Committee (with detailed guidance from a meaningful use workgroup), CPeH has developed a consumer pathway to meaningful use to help inform the discussions.

Here’s an overview of our recommendations:

• To ensure care is comprehensive, coordinated, personalized and planned:
  • By 2011:
    • Care summary is generated and shared with the patient and other authorized providers and family caregivers after every visit or
      discharge.
    • Reminders about preventive services, medications, necessary/routine tests, and follow-up care are sent to patients via their preferred medium
  • By 2013:
    • Prompts and key information (patient preferences, health goals, functional status, preferred language, advance directives and social situation) are used to individualize and customize care
    • Patient generated data is incorporated into the clinical context for individualized care
    • Connections are made to community resources
• To ensure patients and their caregivers are partners, making informed, shared decisions:
  • By 2011:
    • Patients have electronic access to the lab results, medication lists and problem lists
    • Care summary (see above)
    • Patients are connected to resources that help them understand their medical information in the context of their specific health needs
    • Providers make available shared decision making tools to promote partnership in care and treatment decisions
  • By 2013:
    • Patients have real-time electronic access to their medical record along with linkages to tools that make the information meaningful and useful to them
    • Patients have access to evidence-based decision support tools that enable informed choices tailored to their preferences
• To ensure transitions between settings of care are smooth, safe, effective and efficient:
  • By 2011:
    • Care summary (see above)
  • By 2013:
    • Referrals are made to online patient coaching and/or other self-care management tools
• To ensure patients can get care when, where, and how they need it:
  • By 2011:
    • Patients are able to use secure messaging or email for more timely and beneficial communication with their providers
    • Personal health records (PHRs) or other consumer tools are populated by providers and are easily portable
  • By 2013:
    • Patients are able to use online scheduling for more convenient access to their care providers
    • Providers use remote monitoring to manage patients with chronic illnesses in the least restrictive way
    • Electronic tools provided by the health care team are accessible to people with visual, hearing, mobility, cognitive, and other impairments (and in multiple languages)
• To ensure patients and their caregivers are participants in continuous quality improvement:
  • By 2011:
    • Information about patients’ experience of care is collected electronically and used to improve
    • Quality data are electronically generated, aggregated and publicly reported in ways that are meaningful for consumer use
    • Information about race, ethnicity, primary language, and gender is collected and used in ongoing efforts to reduce disparities
  • By 2013:
    • Data regarding cost and the clinical quality of care are electronically collected and publicly reported for consumer use
    • Outcomes measures are reported stratified by race, ethnicity, primary language, and gender to spur disparities reduction

We firmly believe that effective, meaningful use of HIT can help create a platform for a better, more efficient health care delivery system, but only if we design it to meet consumers’ needs and preferences at the right time, in the right setting, and in the right way. The elements above will take us a long way in getting there.

For those interested in the detailed recommendations from CPeH, please contact me directly or leave a note in the comments section.

What are the best strategies for ensuring that health care reform achieves our multiple goals of universal coverage, cost control, and improved quality? I certainly don’t have all the answers, but it’s worth starting with a few, and have all of you build on them.

To be more specific, my primary question here (I recognize there are other ways of framing the discussion for finding answers to the first question) is: What are practical reforms we could make to the delivery system that create better, more patient-centered care delivery at the same time as reducing (or slowing the rate of growth of) costs that free up money to cover un-/under-insured people?

To start with, we can gradually build an expectation of prescribed patient decision aids into the care delivery process. I described a practical model for implementing this model of shared decision making (SDM) here last week in describing new legislation introduced by Senator Ron Wyden (D-OR) and co-sponsored by Senator Judd Gregg (R-NH). The basic idea is to begin with pilots and the development of standards and measures that lay the groundwork for ubiquitous SDM embedded into future care delivery a few years down the road.

We can also take a different approach to how we deal with costly preventable hospital readmissions.  The opportunity here is enormous, which is probably why legislators are seriously considering revamping Medicare payment policy in this area. An Agency for Healthcare Research and Quality (AHRQ) report estimated that hospitals spent almost $31 billion on over 4 million unnecessary readmissions in 2006.  Almost 20% of Medicare beneficiaries are re-hospitalized within the first 30 days of hospital discharge. For heart failure, that figure rises to 27% and in half of those readmissions, there was no outpatient visit billed to Medicare in the month following discharge.

Thankfully, not only is the financial opportunity huge, but the solutions (comparatively speaking) do not require extraordinary measures. During a recent IxAction Alliance webinar, Mark Stewart from the American College of Cardiology (ACC) described the Hospital to Home (H2H) project ACC has developed in collaboration with Don Berwick’s Institute for Healthcare Improvement (IHI). This summer, 1,500 hospitals will engage in the H2H project (as CMS publicly releases hospital readmission rates for the first time) and implement solutions with information therapy (Ix) components such as:

• Pre-discharge education/assessment
• Medication reconciliation
• Follow-up within specific time frames
• Home health involving patient/family education

Success of H2H interventions will be judged primarily by how well patients and their families:

• Understand when & where to seek medical attention
• Can access and are familiar with their medications
• Can schedule and get to their follow-up appointments

ACC and IHI are just a couple of examples of leaders in this area. Content developers such as Krames, Healthwise and Emmi Solutions have created specific Ix interventions focused on reducing hospital readmissions as well.

Beyond patient decision aids/SDM and Ix to reduce hospital readmissions, what other strategies should be integrated into whatever comes out of Congress to reform the health care delivery system? Share your thoughts in the comments below.

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.