Yesterday, one of the leading right-of-center think tanks, the American Enterprise Institute, released a short report titled, “Hitting the Snooze Button on our Medicare Fiscal Alarm Clock.” In it, Tom Miller offers a series of solutions for Medicare to be more efficient and provide better quality care to beneficiaries. Miller writes that information therapy (Ix) is one of the “earlier and smarter interventions to reduce health care problems and lower cost trends” for Medicare.

Two months ago, one of the leading left-of-center think tanks, the Progressive Policy Institute, wrote about the critical role of Ix in its April 3, 2008 edition of PPI Health Policy Wire. David Kendall described the IxCenter’s most recent white paper (written in collaboration with the Foundation for Informed Medical Decision Making) under the title, “An Ounce of Information Is Worth a Pound of Cure.”

The fact that Ix is showing up as an important element of health care delivery redesign from think tanks on both sides of the political idealogical divide provides another indication of the importance of Ix in any future efforts at health care reform.

We have finalized another exciting session at our 7th Annual Ix Conference (next week–June 12 & 13–at the Newseum in Washington, DC).

This session will discuss how the HIT agenda needs to be conceptualized for health care reform with an eye toward consumer needs for information as well information technology. Following a framing of the public policy issues on information sharing, current and past Capitol Hill staffers will share their perspectives on strategies to leverage HIT and patient-centered care in health care delivery redesign as Congress prepares for the 2009 health care reform debate. They will discuss legislation focused on improving quality, HIT adoption, patient-centered care, and access for underserved populations.

We have an excellent lineup for this panel.

• Kavita Patel, MD, Senate Health, Education, Labor & Pension Committee (Democrat side)
• Joel White, Executive Director, Health IT Now Coalition (formerly House Ways & Means Staff Director–Republican side)
• Claudia Williams, Director of Health Policy & Public Affairs, Markle Foundation

Click here for the rest of the agenda. You can still register for the Ix conference, “Next-Generation Patient-Centered Care.”

The Office of the National Coordinator for HIT released the long-awaited Federal HIT Strategic Plan yesterday. It has two goals: Patient-focused health care; and population health. Furthermore, the plan explicitly states that the 43 strategies proposed are characterized by three things including, “Focus on the consumer of health care as a critical participant in achieving the two overarching goals of the Strategic Plan.

Chuck Friedman, the Deputy National Coordinator who played an instrumental role in writing the strategic plan, will be discussing its implications for Ix implementation–with a particular emphasis on health disparities–at our 7th Annual Ix Conference next week in the session, “Ix Initiatives to Overcome Health Disparities: Strategic Planning and Implementation in the Public & Private Sectors.”

A few strategies (copied below) are particularly noteworthy. If implemented, they could go a long way to advancing information therapy (Ix), improving health care delivery, and saving our health care system.

• Strategy 1.2.6: Encourage health care organizations to provide personal health information in usable standardized electronic form to consumers or their designees.
  • Consumers are being encouraged to take a more active role in managing their own health care. Interoperable health IT can catalyze patient-focused care by increasing consumers’ (or their designees’) ability to electronically access, accumulate, and manage their personal health information. Greater access to usable, electronic health information in standard formats can yield improvements in health literacy, patient-provider communication, care coordination, and overall quality of care. Strategy 1.2.6 seeks to encourage health care organizations to offer health information to consumers or their designees in standardized electronic form.
• Strategy 1.2.8: Through the identification and recognition of standards, empower individuals to use their health data to serve their needs beyond direct patient care delivery.
  • Medical records play a significant role in many areas of an individual’s life beyond direct patient care. Records are needed for everything from preventing illness, to establishing immunizations for school attendance, to determining the impact of a disabling condition in order to obtain services and benefits. Immediately critical in this arena is the need to enable persons with disabilities to authorize the electronic movement of their medical records to key public and private service providers. This strategy seeks to promote the development and recognition of standards necessary to support this type of interoperability, and to encourage providers to take advantage of the benefits it brings.
• Strategy 1.3.6: Identify key PHR functions and features that will allow individuals to link their health information to a wide variety of market-driven personal health tools that they and their designees find valuable in managing their heath and care.
  • PHRs have low rates of adoption to date for many reasons. While secure websites that enable patients to access their electronic health records are widely used where available, there is considerable confusion about what constitutes a free-standing PHR that is wholly controlled by the patient or consumer. This strategy seeks to define the key elements of a free standing PHR that will support secure maintenance of an individual’s personal health information so that it can link to the myriad of applications being developed in the marketplace to support that individual’s ability to manage his or her own health.
• Strategy 1.3.7: Design methods to promote the use of PHRs and other consumer health IT tools by consumers and their designees.
  • Communicating with consumers about the benefits of PHRs and self management of one’s own health may require new approaches to be effective. This strategy will expand and increase our understanding of how best to use these new technologies to the benefit of individuals interested in better management of their own health and care.
• Strategy 1.3.9: Remove technical, financial, workflow, and other barriers to diagnosing, treating, and communicating with patients outside the boundaries of traditional health care settings.
  • Our provider focused health care system is predicated on patients accessing care in the clinical setting. However, actual care is primarily dependent on decisions made in the home, office, or school setting by the patient – often without the guidance of their clinicians. Adoption and use has been very slow of new technologies that can provide data and enable communication between individuals and their clinicians at the time when it is needed. This strategy will promote adoption by helping the industry to understand the sources of the barriers to adoption and by identifying solutions that promote more widespread use of these technologies.
• Strategy 1.4.2: Empower consumers through representation in multi-stakeholder governance entities at the national, state, and local level.
  • For care delivery to truly be patient-focused, consumers’ interests must be reflected in policies and governance for the exchange of health information nationwide. Consumer participation in national, state, and local governance entities is necessary to enable health IT initiatives that reflect consumer priorities, ensure public trust, and maximize consumer welfare. Strategy 1.4.2 emphasizes the importance of consumer involvement in developing organizational policies and procedures around the exchange of health information, identifying effective methods for engaging consumers, and working to promote consumer involvement in activities nationwide.

The US Department of Health & Human Services (HHS) is hard at work developing new objectives for Healthy People 2020. This fourth version of objectives (the 1990 objectives were first published in 1979) is being designed like its predecessors to motivate action and improvements in the public’s health.

Healthy People has been holding stakeholder meetings across the country and held one this morning at the National Institutes of Health, where I had hoped to offer oral public comment. Not surprisingly, many others had the same plan and being number 48 on the list rendered it unlikely that I would get a chance to speak, so I have submitted a brief written statement instead. Here it is:

Healthy People 2020’s objectives should recognize that facilitating patient-centered communication through health information technology (HIT) is absolutely essential to health improvement.

Research has clearly demonstrated that effective care management, particularly for people with chronic conditions, requires engaging them effectively as active partners through proactive delivery of targeted information and other health communication strategies. Most notably, the body of research on the Chronic Care Model (CCM) led by Ed Wagner and the subsequent efforts that have built on the CCM framework have made clear how important the integration of HIT and patient-centered health communication is to improving the health of Americans.

Effective empowerment and engagement of lay people in their health care requires that we develop HIT tools focused on the needs of consumers. Specifically, we need to ensure that personal electronic health tools link individuals’ own health data to accurate, comprehensive content that puts that data into context in an understandable and meaningful way.

The evolution of personal HIT tools is evolving so quickly that we probably cannot even envision what the standard tools of 2020 will look like. If we look back 10 years to 1998, how many people could have foreseen how powerful applications such as online social networks and interactive multimedia health education have become?

What we can do is set objectives for the country that guide HIT developers to ensure that new applications meet consumers’ needs for information that is tailored to their particular needs. That is essential to overcome health disparities and improve health and health care for all Americans.

More to come in the near future on the IxCenter engagement around Healthy People 2020, including discussion of it at the 7th Annual Ix Conference by HHS’s Office of the National Coordinator for HIT and Office of Disease Prevention & Health Promotion. In the interim, if you’re interested in offering your insights, go to the Healthy People 2020 Web site and submit your own public comments.

We have added a new session to the Ix & Health Disparities Track at the 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care.

In collaboration with the U.S. Department of Health & Human Services (HHS), we will hold a session titled, “Ix Initiatives to Overcome Health Disparities: Strategic Planning and Implementation in the Public & Private Sectors.” Three HHS leaders–Chuck Friedman, PhD, Deputy National Coordinator for HIT, Linda Harris, PhD, from the Office of Disease Prevention & Health Promotion, and Ahmed Calvo, MD, MPH, Chief Medical Officer for the Health Disparities Collaborative at HRSA (Health Resources & Services Administration)–are combining with a private sector perspective, Elisa Stomski, MPH, Clinical Research Manager at WellPoint/Anthem Blue Cross.

HHS and stakeholders around the country are building an ambitious agenda for the country to use health communication and HIT to overcome health disparities and improve health and health care delivery for everyone. This session will highlight the process by which HHS is incorporating health communication and HIT into Healthy People 2020. HHS will also report on implementation of related “expanded care model” strategies being deployed at community health centers across the country. For a private sector perspective, WellPoint will share its experience in health improvement outreach to a diverse range of Latino populations.

This will be at the of one of two tracks on the second day that will lead us into some working lunches to develop new learning collaboratives and/or special interest groups for moving Ix initiatives forward.

The Center for Children and Families at the Georgetown Health Policy Institute has just released a series of issue briefs on “Strengthening Medicaid.” I authored one of these papers, “Health Information Technology: Innovative Applications for Medicaid,” which discusses strategies that states can use to improve the quality and efficiency of Medicaid programs. The paper addresses how HIT relates to health disparities, health literacy, and the digital divide.

To see more about these issues, see the robust Ix discussion on the patient-centered health information technology (PCHIT) blog.

Congressman Patrick Kennedy (D-RI) re-introduced the “Personalized Health Information Act” at a Capitol Hill briefing today to incentivize adoption of personal health records (for details of the precursor PHR legislation from the last Congress, see my January 3 post: Patient-Centered Health Information Technology in the New Congress). Some of the observations about the issues that most struck me and their relevance to information therapy (Ix) about the two-hour briefing follow.

First, unlike the initial unveiling of the bill last Congress, Kennedy announced this version with a wide array of supporters. The briefing featured: a Republican co-sponsor, Dave Reichert (R-WA); provider and health plan sponsors from post-Katrina Louisiana (LSU Health Network, Louisiana Blue Cross Blue Shield); representatives of organized medicine (American Academy of Family Physicians); advocates from the voluntary health world (American Heart Association); and usual-suspect industry supporters (Microsoft, Medem, Allscripts).

Second, the message was clearer that this is less about health information technology (HIT) than about better care. Specifically, the congressman and his staff (Michael Zamore) drove home that PHRs are a vehicle to proactively delivering better, more personalized communication and care. It is interesting to note that, although it advocates vigorously for HIT, the specific mission of the House 21st Century Health Care Caucus (of which Kennedy is Co-Chair) is “to transform the health care system through information and technology to improve patient safety and health care quality, lower costs, and coordinate care.” Note that it specifically is not about IT but “information AND technology.”

Third, and somewhat related, Kennedy (and others) made the point that even though “people aren’t clamoring for ‘health IT,’” those dealing with the challenging health care issues want the functionality of PHRs whether they call it that or not. The congressman noted that people with chronic conditions know how difficult it is to get the health care information they need and they are increasingly expressing that need in various ways. Or, as Medem CEO Ed Fotsch analogized, “I don’t care about the bank’s information technology systems, but I want the ATM to work.” He suggested that this legislation can help to harness the consumer as a market driving force, similar to what happened in the banking industry with ATMs.

Fourth, the focus on advancing proactive delivery of personalized communication to improve care was shared by all of the legislation’s sponsors. Most interesting to me was that Microsoft specifically was focused on information therapy (even if MS Corporate VP Peter Neupert did not use that terminology or “Ix”). In focusing on the fact that health care is essentially an “information management issue,” Neupert’s language literally paraphrases the informal Ix definition. He described health care being “about getting the right information to the right person at the right time and making sure that information is accurate.”

Neupert also said that “the data is a necessary but insufficient condition…for making the right decision,” much the point of the Issue Brief I authored for the California HealthCare Foundation, “Lost in Translation: Consumer Health Information in an Interoperable World ” (http://www.chcf.org/topics/view.cfm?itemID=114624). Or, perhaps more to the point, in the Q&A, he also agreed with my amendment that the “right information” must not just be accurate but also be meaningful and understable to the average consumer. In fact, several of the panelists were sufficiently interested in this issue to respond to the question. People recognized that this important legislation represents an important beginning in the government’s effort to advance personalized communication and strengthen patient-clinician relationships.

It’s clear that the raw data populating PHRs (often deriving from administrative and clinical data sources) have little intrinsic meaning to the average consumer without some mechanism for translating that data to practical and usable information. We need to develop a blueprint for patient-centered HIT that provides infrastructure for PHR adoption and the practical use of such tools by a diverse range of people with varying needs and backgrounds.

The IxCenter is embarking on such a project and you can get a taste of it from some of the work we’ve been featuring on PHRs and related topics (see our Web site at www.ixcenter.org). By the time of our annual Ix conference (October 8-10 in Park City), we anticipate this work being in full swing, so make plans to join us there. In the interim, interested parties should contact me (jseidman@ixcenter.org) to find out if their work has synergies with ours.

–Josh

With the 110th Congress about to get underway, it’s exciting to think about the possibilities for patient-centered health information technology (HIT) legislation. Last fall, Congressman Patrick Kennedy introduced a bill (HR 6289) that would create incentives for using personal health records (PHRs). Unlike much of the HIT legislation out there, it really focuses on consumer’s personalized information needs and enhancing the clinician-patient relationship. In particular, the bill describes requirements including that a qualifying PHR has the capability of “sending patient-specific patient education, reminders, and clinical messages to patients based upon data in the record.”

The bill, appropriately titled the Personalized Health Information Act, that was introduced in the 109th Congress likely will be reintroduced soon for the new Congress. Although it’s not clear how strong the financial incentives will be (though private & public organizations can contribute to the incentive fund with targeted information therapy (Ix) campaigns), there are several sections that are all about Ix…without calling it that. For example,

• One of the provider requirements is that (Sec. 2.c.4) “The physician (or provider) uses the QPHR as appropriate and authorized by the patient to communicate appropriate patient education and care management messages.”
• And the entire section (2.e.1.E) on “Messaging Capabilities” is all about Ix…

E) MESSAGING CAPABILITIES-
(i) EDUCATION REMINDERS- Subject to clause (v), the record is capable of sending patient-specific patient education, reminders, and clinical messages to patients based upon data in the record, but such messages shall not be sent unless such messages comply with standards adopted under paragraph (3). The Secretary shall work with the Secretary of Homeland Security and the Director of the Centers for Disease Control and Prevention to optimize the public health and emergency response capabilities of the networks created by QPHRs.
(ii) FEDERAL REMINDERS- Subject to clause (v), the record provides for the sending on behalf of Federal agencies of objective, accurate, patient-specific messages to patients concerning their health care or benefits, but such messages shall not be sent unless the messages comply with standards adopted under paragraph (3).
(iii) FUND PARTNER MESSAGES- Subject to clause (v), the record provides for the sending, on behalf of Fund partners who contribute to the Fund, appropriate patient-specific messages to consumers (with whom such partners have pre-existing relationships) concerning the patients’ health care, medications, treatments, medical devices or benefits, but such messages shall not be sent unless such messages comply with standards adopted under paragraph (3).
(iv) HEALTH PLAN NOTIFICATION- The QPHR service notifies, no less frequently than quarterly, each Fund partner that administers a health benefit plan of the individuals who are enrolled in the plan and who have a QPHR established.
(v) LIMITATION ON COMMERCIAL SOLICITATION- The record does not allow any commercial solicitations, marketing, or messages to patients unless the patient is a patient or beneficiary of the sender, uses the sender’s product with a prescription or recommendation of a provider, or has some other pre-existing relationship (as defined by the Secretary), or other messages that do not comply with standards adopted under paragraph (3), and the record ensures that every message clearly identifies the source of the content.
(vi) PATIENT OPT-OUT- The record allow a patient (or patient’s authorized representative) to opt out of receiving messages entirely or from particular sources.Honestly, I don’t have any idea what the chances are for this legislation to move forward, but at least it’s nice to know that HIT legislation is being proposed to address the ways that HIT can truly support patient and consumer empowerment.

Honestly, I don’t have any idea what the chances are for this legislation to move forward, but at least it’s nice to know that HIT legislation is being proposed to address the ways that HIT can truly support patient and consumer empowerment.

Let’s hope that this is just the beginning.

- Josh

For those of us who spend our professional lives trying to figure out how to make the world a better place, our immediate measures of success can sometimes block our view of the future. More specifically, the focus on short-term objectives often hinders our ability to plan for what might await us if we actually achieve them. It’s the proverbial “Now what?” question.

As someone who has been inspired since my adolescence by the leaders of the civil rights movement (particularly Martin Luther King, John Lewis and Thurgood Marshall), I have long wondered about how they perceived the juxtaposition of their enormous triumphs of the 1960s coupled with the continued challenges that face the African-American community.

The New York Times’ columnist, Bob Herbert, shared an important insight in his op-ed column today along these lines:

“James Farmer, who helped create the Congress of Racial Equality on Gandhian principles of nonviolence, once told me that even as the civil rights movement was racking up its stunning successes, its leaders made a grave error.

“‘We did not do any long-range planning,’ he said. ‘So we were stuck without a program after the success of our efforts, which included passage of a civil rights bill and voting rights legislation. We could have anticipated the backlash that followed. We could have asked ourselves what the jobs prospects would be for blacks in the ’70s, the ’80s, the ’90s, and later on. By and large we didn’t do that, except for affirmative action. We should have had a plan.’”

Given the remarkable contributions that they made to society, I could never criticize them for lack of foresight (though James Farmer certainly has earned that right), but it does lead one to think (with respect to health care)…

…Universal health insurance seems so distant and yet we better have a good plan for what that system will look like when we get there…

…Reducing waste in the system means little if we can’t leverage new efficiencies to improve quality and the care experience…

…Ubiquitous adoption of information therapy is a long way off but it’s not enough to integrate targeted health information into the normal course of care delivery…

…I could go on…

For those of us trying to fix our broken health care system, we should be careful about focusing on short-term objectives to the exclusion of what we are really hoping to achieve: a truly safe, effective, patient-centered, timely, efficient and equitable health care system (to paraphrase the Institute of Medicine); and one that results in true health–a state of complete physical, mental and social well-being (to paraphrase the World Health Organization).

What is your answer to the question: Then what?

–Josh