The Patient-Centered Outcomes Research Institute has just appointed four new advisory panels that will help guide hundreds of millions of dollars in research grants. Unfortunately, while PCORI released the new advisers’ names, it neglected to tell the public who the advisory panel members really are.
Let me explain. PCORI says its advisory panels “will be instrumental in helping us refine and prioritize research questions, provide needed scientific and technical expertise [and] offer input on other issues relevant to our mission.” Panel members represent specific stakeholder groups mandated by Congress and are appointed for one year, but they can re-up for another term.
That kind of influence invites attention, and more than 1,000 individuals applied for 82 available spots. Three of the panels correspond to topics that are PCORI national priorities for research: addressing disparities; assessment of prevention, diagnosis and treatment options; and improving healthcare systems. The fourth addresses patient engagement.
So who did PCORI pick? Well, people like Charlotte Collins of Elkridge, MD, representing “patients, caregivers and patient advocates” on the patient engagement panel. That’s the sum total of identifying information given on Ms. Collins and other panel members; there is no educational or professional information at all.Continue reading…
In case you missed it, the shocking news was that health IT companies that stood to profit from billions of dollars in federal subsidies to potential customers poured in – well, actually, poured in not that much money at all when you think about it – lobbying for passage of the HITECH Act in 2009. This, putatively, explains why electronic health records (EHRs) have thus far failed to dramatically improve quality and lower cost, with a secondary explanation from athenahealth CEO Jonathan Bush that everything would be much better if the HITECH rules had been written by Jonathan Bush of athenahealth.
Next up: corporate lobbying for passage of the 1862 Pacific Railroad Bill is blamed for Amtrak’s dismal on-time record in 2013.
The actual scandal is more complicated and scary. It has to do with the adamant refusal by hospitals and doctors to adopt electronic records no matter what the evidence. Way back in 1971, for example, when Intel was a mere fledgling and Microsoft and Apple weren’t even gleams in their founders’ eyes, a study in a high-profile medical journal found that doctors missed up to 35 percent of the data in a paper chart. Thirty-seven years later, when Intel, Microsoft and Apple were all corporate giants, a study in the same journal of severely ill coronary syndrome patients found virtually the same problem: “essential” elements to quality care missing in the paper record.
It is as natural for doctors, hospitals, health plans and others to aggressively affirm their “patient-centeredness” as it is for politicians to loudly proclaim their fealty to the hard-working American middle class. Like the politicians, the health care professionals no doubt believe every word they say.
The most accurate measure of “patient-centered” care, however, lies not in intentions but implementation. Ask one simple question – what effect does this policy have on patients’ ability to control their own lives? – and you start to separate the revolutionary from the repackaged. “A reform is a correction of abuses,” the 19th-century British Parliament member Edward Bulwer-Lytton noted. “A revolution is a transfer of power.”
With that in mind, which purportedly patient-centric policy proposals portend a true power shift, and which are flying a false flag?
Falling Short Of Shifting Power
The two most prominent examples of initiatives whose names suggest power sharing but whose reality is quite different are so-called “consumer-driven health plans” (CDHP) and the “patient-centered medical home” (PCMH). Both may be worthy policies on their merits, but their names are public relations spin designed to put a more attractive public face on “defined contribution health insurance” and “increased primary-care reimbursement.
Recent articles highlight challenges with holding providers accountable for the care they deliver. One of the major thrusts of efforts to transform the American healthcare delivery system has been to become more patient-centered and to allow patients to provide feedback that matters.
Emblematic of this is the emphasis on patient involvement in the final rules for the Shared Savings Program accountable care organizations (ACO).
Echoing former Centers for Medicare & Medicaid Services Director Don Berwick’s plea on the behalf of patients (“Nothing about us without us”), the ACO final rules emphasize patient engagement in governance, quality improvement and the individual doctor/patient interaction.
Michael Millenson’s white paper provides a summary of the patient empowerment movement.
The development of the patient activation measure (PAM) and the Center for Advancing Health’s 43 engagement behaviors has allowed us to study patient-centeredness with more specificity. Studies have shown that activated patients are less likely to choose surgical interventions, have better functional status and satisfaction, are more likely to perform self-management behaviors, and report higher medication adherence rates.
Healthcare policy experts and payers have embraced the argument outlined above, and patients’ reports of their satisfaction with both physicians and hospitals have increasingly been used to calculate financial rewards.
The new Patient-Centered Outcomes Research Institute (PCORI) has been asking different stakeholders about the most important issues to address with the hundreds of millions of dollars the quasi-governmental group will shortly be doling out in grants. Not surprisingly, the stakeholders have been more than happy to respond.
PCORI’s most recent day of dialogue, which I attended as a representative of the Society for Participatory Medicine (SPM), was characterized by genteel civility and a big question mark: “Is PCORI serious about transforming health care?” When I asked directly, I didn’t get much of an answer. The reason, I suspect, goes to PCORI’s origins. It is the offspring of a shotgun marriage between goo-goos and pinky-ringers, and no one is quite sure yet what this child will be once it grows up.
Let me pause here a moment to parse the political shorthand. “Goo-goos” are “good government” types, the kind of folks who trumpet the need for transparency in government or better public transit. Goo-goos, seeing the half trillion dollars or so of waste in U.S. health care system, called for a new national organization to carry out comparative effectiveness research in order to help Americans get the most value for our money.
The goo-goos pointed out that our current regulatory structure is designed to ensure that treatments are safe and effective, not compare them. Nor does the private sector have much incentive to pay for comparative studies that may undermine products currently selling quite nicely, thank you.
With some pundits predicting that President Obama’s re-election could be sabotaged by a slim level of white voter support, I decided to dig through the small print on Obamacare to see how this right-wing lightning rod actually affects my fellow Caucasians.
It turns out that the high-profile legislative highlight of Obama’s first term is very good for white people. When the Affordable Care Act is fully implemented, 12.3 million more white people will have health insurance than have it today, according to an analysis in Health Affairs.
Obamacare looks even more positive for the pale skinned when put next to the Romney-Ryancare alternative. If Obamacare is repealed and replaced by the health reform plan Presidential-candidate Romney now proposes – not to be confused with the plan Massachusetts then-Gov. Romney enacted into law — an extra 24.8 million white people will not have health insurance. (That’s if you apply current demographics to a recent Commonwealth Fund analysis.)
By way of perspective, that’s nearly equivalent to the entire population of Texas (but all white people) having to cope with serious problems accessing medical care and paying for it. Or to use a more politically compelling comparison, 24.8 million white people would be more than twice the size of the whole population of Ohio.
The flap greeting Mitt Romney’s cheerful admission that as president he’d defund Big Bird’s nesting place on public television could turn out to be good news for a federal agency promoting safe medical care that faces a similar extinction threat. But we won’t know till after the election whether the little-known agency benefited from Big Bird’s protective presence.
The stage was set for Romney’s Big Bird boast by a bill Republicans pushed through a House Appropriations subcommittee in July that slashed or eliminated budgets for a host of programs, including public television’s parent, the Corporation for Public Broadcasting. A committee statement at the time said the move was meant “to encourage CPB to operate exclusively on private funds.” That same bill completely abolished the Agency for Health Care Research and Quality (AHRQ).
Health policy wonks lamented that terminating the agency “would badly undermine important research on health care quality, disparities in care and patient safety,” as a member of AHRQ’s national advisory council put it. But hardly anyone else noticed.
The end of AHRQ didn’t even rate a separate mention in the committee’s lengthy press release. And while Politico reported that a Democratic subcommittee member called it “the only federal agency whose sole mission is to improve the quality, safety and cost efficiency of health care,” the subcommittee’s GOP chairman said, in effect, the death sentence was nothing personal. It was just a budget-balancing action and “not a reflection on anything.”
That’s where Big Bird waddles into the picture.
There is a corner of the health care industry where rancor is rare, the chance to banish illness beckons just a few mouse clicks away and talk revolves around venture deals, not voluminous budget deficits.
Welcome to the realm of Internet-enabled health apps. Politicians and profit-seeking entrepreneurs alike enthuse about the benefits of “liberating data” – the catch-phrase of U.S. Chief Technology Officer Todd Park – to enable it to move from government databases to consumer-friendly uses. The potential for better information to promote better care is clear. The question that remains unanswered, however, is what role these consumer applications can play in prompting fundamental health system change.
Michael W. Painter, a physician, attorney and senior program officer at the Robert Wood Johnson Foundation, is optimistic. “We think that by harnessing this data and getting it into the hands of developers, entrepreneurs, established businesses, consumers and academia, we will unleash tremendous creativity,” Painter said. “The result will be improved and more cost efficient care, more engaged patients and discoveries that can help drive the next generation of care.”
The foundation is backing up that belief with an open checkbook. RWJF recently awarded $100,000 to Symcat, a multi-functional symptom checker for web and mobile platforms. Developed by two Johns Hopkins University medical students, the app determines a possible diagnosis far more precisely than is possible by just typing in symptoms as a list of words to be searched by “Dr. Google.” Symcat also links to quality information on different providers and can even direct users to nearby emergency care and provide an estimate of the cost.
The empowered patient, skeptical of professional authority, is not a new phenomenon: he was actually created by the American Revolution.
Reading through historian Gordon Wood’s Pulitzer Prize-winning book, The Radicalism of the American Revolution, I came across a passage describing how national independence from the British led to an independent turn of mind in other spheres. Wood writes that Charles Nisbet, president of Pennsylvania’s Dickinson College, complained as early as 1789 that Americans were carrying their reliance on individual judgment to ridiculous extremes. He fully expected, he said, to see soon such books as “Every Man his own Lawyer,” “Every Man his own Physician,” and “Every Man his own Clergyman and Confessor.”
In fact, New York’s Medical Repository wrote in 1817 of a shortage of “professional pharmacists” at a time when they did drug-mixing and diagnostic duties. But while the Repository acknowledged the lack of professionalism might lead to some mistakes, it continued that “these mistakes would be no more than occurred in Paris, London or Edinburgh, ‘where pharmacy, as a profession, is scientific, exclusive and privileged,’” writes Wood. (Emphasis in original) What a remarkable attitude!
Around this same time, the word “statisticks” appeared for the first time in American dictionaries. However, in America, there was a growing opinion that facts could speak for themselves without expert interpretation. As one popular journal put it in 1811, “The reflections arising out of [the facts] should be left to the reader.”
Like the hero in an old-time movie, Chief Justice John Roberts metaphorically untied Obamacare from the railroad tracks and, with four of his colleagues, pulled it away from the onrushing destructive force of his right-wing colleagues in the nick of time. In doing so he also saved President Obama from political disaster.
Alas, just like in the movies, the villains will soon be back.
While the next five months will determine whether the Court ruling upholding health reform was a victory or just a reprieve, the president has been plucked from the perils of a politically ruinous headline: “Signature achievement of constitutional lawyer president declared unconstitutional.”
In doing so, the Court showed why Americans hate the other guy’s lawyer and love theirs. Roberts embraced his inner reactionary by ruling that the individual mandate did not meet the requirements of the Commerce Clause — even though virtually all respected conservative jurists believe it does, and the conservative Heritage Foundation clearly believed it did when proposing the idea under a Republican president.
However, the Court avoided what would look like a political decision overturning the entire law by ruling that the penalty for not buying health insurance was a constitutionally permitted tax. Which made the law constitutional. Game. Set. Match. (Well, unless you were a poor person counting on an expansion of Medicaid. But if you’re poor, you should be used to losing.)
Don’t you love clever lawyers? At least when they’re on your side?