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.

For those of us parents with twins, we strive to prevent our homes from being natural laboratories for studying our children. Sometimes, it’s hard to overlook.

When my twins were toddlers, they often — like toddlers in general — were playing in the same space but not playing together. In child development lingo, that’s called “parallel play.”

For toddlers, parallel play is a natural phenomenon and nothing to worry about. However, when that term needs to be deployed to describe the communication between clinicians and patients, it’s time to shout, “Houston, we have a problem!” Parallel play in the clinician-patient relationship represents the antithesis of “participatory medicine.”

Thanks to Jane Sarasohn-Kahn at the Health Populi Blog, I came across new data from Harris Interactive that examined — among other things — whether patients share what they find on the Web with their doctors. When asked in 2007, 42% of consumers responded that they “never” share their online health info with their physicians; by 2009, that percentage rose to 56%. Yikes!

We also know from Pew Internet Project data that consumers’ number-one preferred source of health information is their docs, so we have to presume that this hidden Web information is not a desired situation from patients’ perspectives. Barriers to sharing information probably include some combination of: lack of adequate time; poor systems to facilitate information prescribing and exchange; and fear that doctors will not respond positively to the information consumers bring into the conversation from external sources.

The Internet should be a tool that helps elevate the level of discussion between clinician and patient, and it can be. Clinicians and delivery systems that have developed systems and infrastructure to facilitate information therapy (Ix) ensure that Web health information is built into the care delivery process. That facilitates better continuity of care and lays the groundwork for more holistic approaches to care delivery such as a truly patient-centered medical home.

Sarasohn-Kahn suggests that the recession may be part of the reason for this increase in parallel play, and she may very well be right. But whatever it is, it’s likely to exacerbate an already-fragmented care delivery process and lead to worse care for consumers unless we build more Ix infrastructure into the system.

The latest version of the e-health bible was published today by Susannah Fox & Sydney Jones at the Pew Internet & American Life Project. For nearly a decade, many of us have relied on Pew’s data to understand consumer needs with respect to health information technology (HIT). Susannah gave a sneak preview of some of Pew’s new data at our April “Health 2.0 Meets Information Therapy Conference,” but there’s nothing quite like getting to sink your teeth into 70 pages of Pew data.

Some of what’s most interesting is what has changed in the last 8 or 9 years. In recent conversations I’ve had about Healthy People 2020 or other prognostications about the next decade of HIT developments, we sometimes forget how quickly the world changes technologically speaking. Comparing Pew’s 2000 data to Nov-Dec 2008 sample of American adults:

• Internet access: Jumped from 46% to 71%
• Looking online for health information: Jumped from 25% to 61%
• Broadband access: Jumped from from 5% to 57%

Just as importantly, however, there’s a little bit of plus ça change, plus c’est la même chose. Despite the growing popularity of the Web, more people turn to a health care professional (86%) and a friend or family member (68%) than the Internet (57%).

Perhaps what I’ve always found most important about the Pew data is understanding the impact of the Web on how consumers make health decisions. After all, if a Google search falls in the forest and nobody does anything with the tree they downloaded, has it really made a difference?

Indeed, Pew data demonstrate that the information found on the Internet does influence decision making for a majority of consumers who go online. Of those people:

• 60% say the information found online affected a decision about how to treat an illness or condition.
• 56% say it changed their overall approach to maintaining their health or the health of someone they help take care of.
• 53% say it lead them to ask a doctor new questions, or to get a second opinion from another doctor.
• 49% say it changed the way they think about diet, exercise, or stress management.
• 38% say it affected a decision about whether to see a doctor.
• 38% say it changed the way they cope with a chronic condition or manage pain.

And, on the critical “help or hurt” question, 60% of online health users say they or someone they know has been helped by following medical advice or health information found on the Internet, in contrast to just 3% who say it has caused harm. The former figure has nearly doubled since 2006, whereas the latter has stayed the same.

I’m not disappointed (but not surprised) that consumer engagement tools seem to not have done a great job so far. Only 19% of online health users have signed up to receive updates about health or medical issues. We clearly need to do a better job of meeting people where they are at in order to get them more engaged in online management of their health.

Finally, for understanding the impact of demographics on Americans’ use of the Internet, broadband, and cell phones, there’s nothing that tells the story as well as Pew’s access thermometers, which have now been updated with December 2008 data.

(Methodology Sidebar: Pew — in part made possible by its partnership with the California HealthCare Foundation — deserves special credit for two methodological advances. First, Pew now surveys (I think they added this a year or two ago) using both landline and cell phone samples, recognizing that an increasing and unevenly distributed portion of the US population cannot be reached by landline (this issue got a lot of press — particularly from places like Pollster.com and 538.com — during the 2008 presidential primaries and general election, as many thought that could lead to underestimations of the Obama vote). Second, they did Spanish-language interviewing to capture information from the second most prevalent language spoken in the US. This substantially improves the validity of all of Pew’s demographic comparisons that involve Latinos.)

Thanks to Pew for continuing to facilitate a data-driven conversation about consumer behavior with respect to the Internet.

Several articles published in today’s New England Journal of Medicine are worthwhile reads (all of which, I believe, are free full text).

• News flash (not!): We have a long road ahead. A new study out of Harvard updates the dreary state of electronic health record (EHR) adoption by U.S. hospitals. Just 7.6% of surveyed hospitals have a basic system and a measly 1.5% have a comprehensive EHR system throughout the hospital.
• Incoming HHS National Coordinator for Health Information Technology David Blumenthal, MD, MPP, makes some important points about how the HIT provisions in the stimulus bill were designed to generate “improvements in health and health care” and not just increase EHR adoption. Aside from the financial incentives (and  down the road, penalties) for providers and the important infrastructure created, Blumenthal highlights the critical importance of the “federal government’s skill in defining two critical terms: ‘certified EHR’ and ‘meaningful use.’” He is right that tightening certification criteria and “motivating providers to take full advantage of EHRs” are prerequisites for HIT actually improving quality and efficiency. I’ve described this and the importance of stretching out “meaningful use” to meet the needs of consumers before.
• Paul Tang, MD (Palo Alto Medical Foundation), and Tom Lee, MD (Partners), have an excellent piece comparing the advantages of stand-alone personal health records (PHRs) with what they call “integrated PHRs.” The latter term describes electronic portals that allows patients to gain access to provider EHRs and, perhaps more importantly, communicate directly with their clinicians. One of the big question marks is how fast will the stand-alone version effectively integrate with clinician records to help support the kind of information-supported communication that facilitates participatory medicine.
• An interesting piece from Kenneth Mandl, MD, MPH, and Isaac S. Kohane, MD, PhD, from Children’s Hospital in Boston, makes the argument that HIT “components should be not only interoperable but also substitutable.” Thankfully, they describe in excellent detail the broad range of applications and examples that comprise those “components.” It’s an excellent list, though it could benefit from some more emphasis on content applications.

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.

A good study appeared in the October 30, 2008 New England Journal of Medicine related to the first public release of HCAHPS data. HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) is a “standardized survey of the experiences of adult inpatients with hospital care and services.” This study is based on July 2006-June 2007 voluntary reporting, but Medicare (CMS) is requiring hospital reporting going forward.

Overall experience data are not surprising: Reasonably satisfied but plenty of room for improvement. Although 89% of patients rated their overall experience 7 or better (10 being the best), only 63% rated it a 9 or 10.

What was most informative was where the data suggested were the greatest areas for improvement:

• Provision of clear discharge instructions
• Communication about medications
• Nursing care
• Pain control

I could make an argument that good information therapy (Ix) that was integrated into systems of care would improve performance in all four of these areas. Clearly, though, the first two areas for improvement are obvious targets for Ix interventions.

Hospitals that want to score better in how they provide discharge instructions and communicate about medications should be working hard now to embed Ix strategies into their core care delivery practices. With public reporting of HCAHPS data just around the corner, this could become an important strategic initiative for hospitals in competitive markets.

It’s fascinating when two of my passions collide in the opinion pages of the New York Times like they did over the last week. On Friday, October 24, some seriously strange bedfellows came together to write about, “How to Take American Health Care from Worst to First.” Strange enough that Newt Gingrich and John Kerry joined together, but the lead author was Billy Beane, often thought to be the pioneer in the trend toward data-driven major league baseball general managers.

I’ve been studying the health care system for nearly two decades, but I’ve been studying sabermetrics (complex baseball statistics) since a decade before that. So you’d think that their argument would resonate with me and, to some extent, it does.

Their thesis is rational in many ways. Much of what is done in health care has no evidence basis, and we end up spending a lot of money on things that are unnecessary or even detrimental (or, at the least, things for which we just don’t know). By developing a better evidence base and encouraging more use of it, we could improve quality and lower cost.

What’s lost in their argument is that health care is not a spectator sport. Now being an intense fan (or, to be honest) a rabid citizen of Red Sox Nation, I have at times believed that the way I sit, the clothes I wear, or whether the sound is muted has an impact on the quality of play delivered by my beloved baseball team. But in my more considered moments of reflection I recognize that I’m neither responsible for the Sox triumphs in 2004 and 2007 or their failures (which I will not painfully reflect upon here).

But in health care the “players” who are unpaid have a bigger impact on the outcome of the game (in this case, their health) than those who get paid the big bucks. You can call them patients, consumers, citizens, or people, but you can’t call them spectators, because their choices, actions, and behaviors dramatically affect their health and the costs associated with their illness and care.

In fact, the only thing that may have a bigger impact on an individual’s health than his or her actions is the collective impact of the community or society. I’m not talking here about rally caps and deafening cheers but our environment, the food economy, advertising, transportation options, etc.

Although I thought today’s NYT Letters to the Editor on the subject were interesting, I was disappointed that none of them focused on this angle (although one did address societal ills). Instead, they addressed the moral vs. business distinction, the greater complexity of health care, universal health care, and medical education reform.

Billy Beane is absolutely right about sabermetrics, and I fully agree with Gingrich and Kerry that substantially more needs to be invested in comparative effectiveness research and provider reimbursement reform is critically important. But that’s only going to move us forward a little ways. If we want to dramatically improve US health care, we need to focus much more attention on advancing participatory medicine and all of the components involved in it.

Amid more data released that consumers are not using personal health records (PHRs) or don’t even know what they are, the state of West Virginia has launched a Web site designed to convince consumers of the merits of health information technology (HIT).

As best I can tell from eHealthWV Web site, here’s the plan: “To ensure consumer input and involvement in the process of health information exchange and electronic health records, WVMI and its partners launched a new phase to the project in mid 2007.  It involves educating consumers about electronic health records and health information exchange.”

I’m sure they mean well, but it would be helpful if one of these state efforts “ensured consumer input and involvement” by actually soliciting their input before designing their outreach. Right now, most states and health information exchange activities are focused on addressing consumers’ fears about data rather than their needs about health care.

Given survey data that highlights consumer concerns about privacy and security, it’s reasonable to ask: Why are consumers so focused on these issues with respect to health information exchange? It’s probably, in part, because consumers don’t care about data. How many consumers do you know who are passionate about data?

In contrast, consumers do care about their health…and resources that help them manage it. But most consumers have not experienced an electronic tool that facilitates the flow of appropriate information to them in a timely way.

Education can be bidirectional (or multidirectional or collaborative). Rather than framing the question as “how do we get consumers to understand why this is important to them?” we could start outreach and engagement by better understanding consumers’ needs with respect to managing their health.By taking a more proactive, user-centered design approach, such as used by the health system PeaceHealth in the Pacific Northwest, they could design tools and health information exchange plans that meet consumers’ needs rather than try to convince consumers about what they should care about with respect to management of their health. After asking consumers what health tasks they wanted to accomplish, developers created electronic shared care plans and other tools that met those specific needs.As I have blogged about before (and is described in an excellent New York Times Magazine article from 2007) this is the approach that pioneering companies like Toyota have taken to understand consumer needs. This is where the intersection of patient-centered care and HIT has so much promise. But we can’t get there unless we start by observing and talking to the consumers themselves.

A recent University of California study reports a striking increase in fatal medication errors (FMEs) over the last 22 years.  The study examined accidental deaths occurring at home, but also included deaths occurring away from home.  The deaths were further categorized into those involving alcohol and/or street drugs and those not involving alcohol and/or street drugs.

The most striking increase in FMEs was with those that occurred at home, especially those involving alcohol and/or street drugs (a 3,196% increase).  FMEs at home, not involving alcohol and/or street drugs increased by 564%.   FMEs that occurred away from home involving alcohol and/or street drugs increased by 555%.  Finally, FMEs away from home, but not involving alcohol and/or street drugs increased by 5%.

Shifts in health care have resulted in reduced professional oversight and increased patient responsibility for monitoring medication use.  Information therapy prescriptions can play a critical role in complementing medication prescriptions.  If consumers are expected to manage increasingly complex - and potentially dangerous - drug regimes, they need access to tailored information to help them do so safely.

New and important data came out from the Commonwealth Fund today, though–to many people–it may be a big “duh!”

Commonwealth had Harris Interactive do a survey of one thousand adults and found:

• Nearly three out of four (73%) Americans report some sort of barriers accessing doctors in a timely manner.
• Nearly half (47%) report some coordination of care problems.
• Large majorities want their physicians to use a variety of HIT including electronic health records (89%), electronic prescribing (71%), whereas most consumers (91%) cannot access their medical records via the Internet, many of whom would like to do so (49%) and even more would like to be able to schedule appoints online (57%) and communicate with their doctors via email (58%).