Jon Gabel from the National Opinion Research Center has an excellent op-ed piece in today’s New York Times. The basic argument is summarized in his conclusion:

“The Congressional Budget Office’s integrity is beyond questioning. But the record shows that it has substantially overestimated the cost of health care reform three times out of three. As Congress now works on its greatest push for reform in generations, the budget office needs to revise the methods it uses to make predictions about costs.”

Far from being an arcane methodological debate, CBO’s approach has profound consequences for health care reform and for the long-term health and economic conditions of the country. As Gabel puts it:

“The budget office’s cautious methods may have unintended consequences in the current health care reform effort. By underestimating the savings that can come from improved Medicare payment procedures and other cost-control initiatives, the budget office leads Congress to think that politically unpopular cost-cutting initiatives will have, at best, only modest effects. This, in turn, forces Congress to believe it can pay for reform only by raising taxes, which then makes reform legislation more difficult to pass.”

The reason that CBO has underestimated savings from past reforms of Medicare is that it makes the assumption that — without convincing empirical evidence of an initiative’s cost impact — it basically “scores” it as delivering zero savings. No doubt that CBO is consistent and conservative, but that doesn’t necessarily produce the most accurate budgetary forecast.

Perhaps more so than any other area in the federal budget, there are an enormous number of unknowns in health care. CBO has historically built its model on the premise that absence of evidence equates with evidence of absence.

But there is a major distinction. “Evidence of absence” means that we have an empirical reason to believe that there is no effect of an intervention (in this case on cost). In that case, it makes sense to score zero savings.

In contrast, “absence of evidence” simply means that we do not have sufficient evidence that an intervention produces any effect.  The problem is that, by definition, any true “innovation” (defined by Merriam-Webster as “the introduction of something new”) has no evidence. Which is to say: CBO has effectively ruled out scoring savings for true innovation.

Perhaps some would argue that’s an overstatement in that we certainly commonly use the term innovation to describe something that has been around long enough to be tested. Yes and no. There’s no doubt that new and innovation are relative terms, but there are still important reasons why that approach for CBO remains flawed.

First, evaluation takes time. To design a study, appropriately manage it, collect and analyze data, submit to peer review, and publish often takes many years.

Second, the level of evidence that CBO typically requires takes A LOT of time.

Third, innovation often comes from combining different initiatives and strategies that create a combined effect greater than the sum of their parts. Information therapy, patient decision aids, comparative effectiveness research, and other delivery system reforms may have a powerful impact when thoughtfully and appropriately combined together.

Fourth, the pace of innovation and the greatest innovative impacts can be dramatically robust. There is no way, in its current model, for CBO to capture those things that will have the most important effects on the federal health budget.

Like Jon Gabel, I don’t question the CBO’s integrity or analytical capacity, but I do believe that its methodological approach requires amendment. As I have written before, we — as health services researchers (and I admit to being one myself) — need to maintain our analytical rigor while being as creative in our research methods as the innovators are at innovating.

We should not shy away from the empirical idiosyncrasies that innovative care delivery initiatives create. Rather, we should rise to the challenge by employing a broader set of research and analytical skills to tackle these compelling research questions about new innovations. Indeed, the new care delivery strategies create opportunities for health services researchers to develop their own innovative research techniques.

I hope that health services researchers out there are up to that challenge.

If we aren’t, we will continue to create perverse public policy incentives.

When I reported on the IOM’s prioritization of topics for comparative effectiveness research (CER) three weeks ago, I highlighted the positive evolution in CER thinking represented by the listing. Whereas CER often has been about comparing the effectiveness an established drug to a newer, more expensive one, we need to do more than that. I wrote:

I’m all for trying to find out whether me-too drugs add any significant value. However, the greatest opportunities for implementing delivery system change that improves care effectiveness and efficiency relate to innovations in how care is organized and delivered, and how insights are communicated to the broad range of health care actors — most notably consumers.

There are some good CER articles in today’s New England Journal of Medicine. In “Comparative Effectiveness — Thinking beyond Medication A versus Medication B,” Kevin G. Volpp, M.D., Ph.D., and Anup Das, have made similar arguments.

In considering the allocation of federal resources for comparative-effectiveness research (CER), however, it is important that we maintain a broad view of ways of improving the health of the population. As many as 40% of premature deaths in the United States are attributable to Americans’ own health-related behaviors. If CER’s full potential for improving the population’s health is to be realized, such comparisons must go beyond those between medication A and medication B or device A and device B: we must also assess medications or devices in comparison with behavioral interventions, either alone or in conjunction with other approaches. In addition, since many diverse aspects of care delivery have a direct effect on patients’ health outcomes, we should assess policy-based interventions and their relative effectiveness in improving health.

In many cases, it seems clear that patients’ individual health-related behaviors are the proximate cause of disease and of the need for medical treatments. For example, obesity is a major risk factor for hypertension, diabetes, lower back pain, and other conditions. Patients who are able to lose weight may be able to reduce or eliminate their use of medications for these conditions. It therefore makes sense to compare, among patients with diabetes, medication-based approaches to the treatment of diabetes with, for example, the effects of behavioral approaches to weight reduction.

How we focus the CER agenda would be important enough just by virtue of the injection of dramatic increases in federal CER funding — $1.1 billion from the American Recovery & Reinvestment Act (ARRA). But the stakes have grown even greater this week given President Obama’s negotiations with leaders on Capitol Hill regarding how CER can play a critical role in long-term cost control and real reform of the delivery system.

If we maximize the potential of ARRA CER resources by investing in this second-generation approach to CER, we might actually have the combination of information and infrastructure that can bend the long-term cost curve while improving the delivery system.

In the couple of years since I’ve gotten to know him, I’ve often found myself leaving a room with Neil Calman — saying to myself, “Wow! That really captures the issue in front of us.” Or, sometimes it’s “If only we could clone Neil — or simply replicate his leadership — we could eliminate most of our country’s health care problems.” Neil is a primary care physician who is CEO and Co-Founder of IxAction Alliance member, the Institute for Family Health, a network of 17 federally qualified health centers in New York.

In Friday’s post on this blog, I mentioned the questions he posed for meaningful health information exchange that move the ball forward substantially. In the past, I’ve cited other wisdom from Neil, such as:

• HIT vendors’ responsibility to teach people how to use HIT products meaningfully
• The connection in HIT evolution between quality and equality
• His proclamation that training his own clinicians on effective HIT use was about helping them to become (in his words) “information therapists”
• (And from the same blog post) HIT implementation with his safety-net population was approached with the goal of building trust with their patients

At last week’s HIT Policy Committee meeting, Neil made another comment that triggered a light bulb flickering on over my head. As concerns over the implications of HIT meaningful use definitions on provider liability swirled, Neil raised a fascinating point. We are getting close to an understanding around a new “standard of care in the community” related to the meaningful use of electronic health records (EHRs). Neil suggested that soon “if an error in care that could have been prevented” by a meaningfully used EHR, there is in effect a new standard of care to which all providers will be held accountable.

The literature has demonstrated that little relationship exists between actual malpractice and legal action. This is true in both directions. Many horrible and preventable medical errors never are punished while many lawsuits are settled where negligence may not be the issue.

What the literature tells us is that most medical malpractice lawsuits arise because of poor advance communication resulting in a mismatch between patient and clinician expectations. Effective information therapy (Ix) that leads to informed choice in advance of medical and surgical procedures can dramatically reduce the likelihood of malpractice suits being filed.

More importantly, by meaningfully using HIT to deliver Ix, clinicians can dramatically reduce the likelihood of committing medical errors or having consumers unprepared for the clinical realities that confront them. And that’s a standard of care for our community.

David Blumenthal, who heads the Office of the National Coordinator (ONC) for Health Information Technology (HIT), spoke at a Center for American Progress briefing this morning on, “Aligning Health IT and Health Reform: Achieving an Information-Driven Health Care System.”

Blumenthal reiterated that the HIT provisions (HITECH) of the American Recovery & Reinvestment Act (ARRA) were not about the narrow objective of HIT adoption, but much more so about the bigger goals of “health reform, health improvement, effiiciency improvement, getting more value…” He added, importantly, that this wasn’t just about their interactions with providers, “but also to help people stay away from the health care system and live healthier lives.”

Blumenthal commented that the ambitious HITECH timetable creates enormous time pressure on ONC, but it also “gives us a discipline; it focuses us on the most important things… What is meaningful use and how do we get to it?”

ONC’s first draft definition made important strides (though there is still room for improvement), particularly in terms of strategies for better engaging consumers and families. The HIT Policy Committee advising ONC will issue its next iteration of the meaningful use definition at its meeting tomorrow.

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.

Kevin Sack has a nice piece in today’s New York Times titled, “Health Co-op Offers Model for Overhaul” about the role that cooperatives might have in the health care reform debate. “Co-ops” suddenly are a hot topic in Washington, sparked by loose proposals from Senator Kent Conrad (D-ND) that are trying to bridge the ideological divide that has formed between proponents and critics of a public plan option in a comprehensive health reform bill. Senators like Conrad view co-ops in a favorable light largely because of perceived corollaries with rural energy co-ops in places like North Dakota.

But the article is really about Seattle-based Group Health Cooperative (a founding member of the IxAction Alliance), one of the country’s best examples of progress that can be made by implementing health information technology (HIT) with a patient-centered care lens. Sack addresses this head on when he quotes Group Health’s leader:

“There’s a kind of accountability to the patients in our system,” said Scott Armstrong, president of Group Health. “And when you bring the principles of a cooperative to bear, patients feel responsibility for holding the system together and for their own health.”

Five years ago, I did a site visit at Group Health and spent time with administrators, clinicians, and — perhaps most importantly — with the consumer-elected Chair of the Group Health Board of Directors. In the resulting best practices white paper, “The Arrival of 21st-Century Health Care: Group Health Cooperative Reengineers Its Delivery System Around Information Therapy and Patient-Centered Informatics,” the principles of consumer governance and empowerment came through loud and clear:

“Group Health’s founders established the HMO on cooperative principles and envisioned a three-pronged approach to its operational structure:

• Governance resides with the members through the consumer-elected board.
• Managers bear accountability for administration of the health plan.
• Physicians have responsibility for medical decision making in their independent but exclusively contracting group practice.

The founders created this model to facilitate an egalitarian approach to how medicine and health care should be run and consumed. They sought to democratize the practice of medicine and to create a health care delivery system that was completely focused and centered on the needs of its members.

Now, 21st-century technology has facilitated execution of that vision. ‘It’s the realization of a dream,’ said Debbie Ward, Group Health member and former chair of its board of directors.”

Indeed, as has been stated here and by many others recently in the debate over “meaningful use” of HIT, new technologies should be deployed as tools to achieve a patient-centered care delivery system vision that supports more effective and efficient care. That approach is primarily what has facilitated Group Health’s success in achieving many of the advances in participatory medicine, chronic care management, and implementation of the patient-centered medical home (PCMH) that Sack describes throughout the article. In fact, Group Health has been working on PCMH models of care delivery for many years before it became quite so fashionable, but its patient-centered HIT strategy created a platform for taking PCMH to the next level.

I’m not quite sure what to tell Senator Conrad. Even though the details of his co-op plan remain unknown, I’m quite confident he won’t be proposing a series of Group Health-type arrangements in which the country’s doctors all report to their patients. And I don’t know how much good it will do just to have co-ops acting as insurance purchasers (they bring back memories of the infamous HIPCs — health insurance purchasing cooperatives — that were all the rage during the 1993-94 health reform debate). On the other hand, if they provide a political vehicle for moving us substantially further down the road to universal coverage and are paired with other major advances in patient-centered care delivery, I’m certainly not going to complain.

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.

As a marathoner, I’ve been known to throw a few running metaphors around, so I take note when others do as well. If some journalists and bloggers are right, it appears that the fate of health care reform may depend on what happens when legislators hit the proverbial “Wall.”

In today’s New York Times, David Herszenhorn (in “Baucus Grabs Pacesetter Role on Health Bill”) builds off Senator Max Baucus’s history with ultramarathoning in explaining the mammoth legislative battle of health care reform.

“In many ways, the push to overhaul health care is a legislative ultramarathon. And however improbable it might seem, Mr. Baucus, son of a rancher and great-grandson of a member of the Cowboy Hall of Fame, is setting the pace.”

Herszenhorn concludes the piece with a parallel between the pain and endurance required for both marathoning and health care reform, citing comments of OMB Director Peter Orzag:

“Mr. Orszag, who has agonized over health care costs for years, noted the Montana senator’s penchant for pain. “I am struck,” Mr. Orszag said, “by how he describes this as fun.”

In her blog post last week, “The Week in Health Reform - Hitting a Speed Bump,” Jocelyn Guyer of the Georgetown Health Policy Institute’s Center for Children & Families, concluded with a Boston Marathon metaphor:

“We may be heading up Heartbreak Hill, but the marathon of health reform is far from over.”

I’m sure these aren’t the the first two pundits to compare the federal legislative process to a marathon, and health care has obvious connections because of the physical and mental health and challenges associated with marathoning. The arduous and grinding task of continuous strenuous effort definitely is reminiscent of the pain one endures during the course of a 26.2 mile effort on foot.

For those of us who lived through the 1993-94 health reform marathon, all the preparation appeared to make some sort of health care reform an inevitability before legislators figuratively “bonked” when they hit the Wall. The early mistakes in the health reform run eventually caught up to the Clinton administration, ultimately resulting in  a DNF (did not finish).

Now, after years more training under our collective belts, leaders appear to be well hydrated and much better prepared, having learned lessons that one can only truly understand by doing it wrong before. But many factors often crop up in a marathon that you know may transpire but still reduce you to a long slog — the blazing sun and 86-degree weather of the 2004 Boston Marathon come to mind for me. Payment reform, debate about the role of government, and new tax policy appear to be the weather front coming our way.

The key on Patriot’s Day 2004 was to keep repeating in my mind a single mantra: “Keep putting one foot in front of another.” It sure was no PR. I lost about 30 minutes that day. But I eventually got to the finish line on Boylston Street.

Whatever people think about the Chairman of the Senate Finance Committee, the story Herszenhorn tells about Senator Baucus completing the JFK 50-Miler with a gash across his forehead suggests that he has no shortage of perseverance and fortitude as he persists in the enormous undertaking of health care reform.

Let’s hope that legislators cross the finish line in the mold of Frank Shorter in 1972 or Joan Benoit Samuelson in 1984, and we don’t recreate the parable of Pheidippides along the way.

At the second meeting of HHS’s HIT Policy Committee today, the committee’s Meaningful Use (MU) Workgroup offered a proposal that represents some important strides forward. From an overarching perspective, we can see progress in the fact that engaging patients and families is now one of the primary four or five goals for how “meaningful use” of HIT can transform health care.

The HHS Office of the National Coordinator (ONC) for HIT distributed a matrix along with the presentation by MU workgroup co-chairs Paul Tang and Farzad Mostashari. One of the five health outcomes policy priorities is “Engage patients and families,” and the associated care goal is “Provide patients and faimiles with access to data, knowledge, and tools to make informed decisions and to manage their health.”

Interestingly, when Mostashari presented the “achievable vision for 2015,” the slide advocated for “All patients have access to their own health information.” But Mostashari said, “All patients have access to the information they need to have.” I think the latter describes a broader set of information needs and would do more to meet the health outcomes policy priority.

For the 2011 objectives, Tang stated that the MU Workgroup’s “goal is to capture in coded format and to report health information and to use that information to track key clinical conditions.” By 2013, the goal becomes “guide and support care processes and care coordination,” leaving “achieve and improve perofrmance ans support care proceses and on key health system outcomes” by 2015.

The 2011 objectives under engage patients and families:

• Provide patients with electronic copy of — or access to — clinical information (including lab results, problem list, medication lists, allergies) per patient preference (e.g., through PHR) for outpatient (OP) and inpatient (IP) care
• Provide access to patient-specific educational resources (OP/IP)
• Provide clinical summaries for patients for each encounter (OP/IP)

For 2013:

• Offer secure patient-provider messaging capability (OP)
• Provide access to patient-specific educational resources in common primary languages (OP/IP)
• Record patient preferences (e.g., preferred communication media, advance directive, health care proxies, treatment options) (OP/IP)
• Documentation of family medical history (OP/IP)
• Upload data from home monitoring devoices (OP)

For 2015:

• Access for all patients to PHR populated in real time with data from EHR (OP/IP)
• Patients have access to self-management tools (OP)
• Electronic reporting on experience of care (OP/IP)

Many of these elements derive from the document that the Consumer Partnership for eHealth developed (a process in which the IxCenter was involved), though there are some areas where some improvements in the ONC document would go a long way toward driving better care. Some of these points were made during the meeting by HIT Policy Committee member Christine Bechtel, which I voiced support for during the public comment period, and I also added some of my own (or expanded on themes raised by Christine) there and here.

• Certainly, some of the elements should be moved up — earlier in the timeline (e.g., secure messaging, patient access to self-management tools & decision support, and electronic reporting on experience of care).
• The access to electronic information needs to be “timely” (a word that should be added); timely applies both to the speed at which it is made available and the ability to get information targeted to the consumer’s particular moment in care.
• Incorporation of data generated by the consumers themselves beyond just what can be uploaded from electronic monitoring devices (per the 2013 criterion).
• There should be more attention to consumer information tools (beyond just narrowly definted personal health records) and more clarity around the kinds of tools that consumers need — not just self-management tools but also decision support tools and tools that facilitate effective & efficient communication to improve the infrastructure for participatory medicine.

Finally, although clinical summaries are mentioned in this section, there are more ways in which improving care coordination (one of the other key five goals identified by the committee along with: engaging patients and families; improve quality, safety, efficiency, and reduce health disparities; improve population & public health; and ensure adequate privacy & security protections for personal health information). Specifically, the stated care goal for “improve care coordination” is “exchange meaningful clinical information among professional health care team.” Given that, for many of the measures proposed in the care coordination section, there is substantial research to support exchanging clinical information with patients and families improves care, reduces readmissions, etc., there should be an explicit inclusion of patients & families in that exchange.

If you also would like to share your comments with ONC, instructions for doing so are here.