Health Business Blog

Social media and the rise of the empowered patient is disrupting the cozy business of medical research and development. As I wrote last week (Let’s give patients a little more credit for their role in clinical research) even when researchers acknowledge that patients have a role in study design, recruitment and retention, that acknowledgment is grudging.

More typical is the situation I read about in Healthcare IT News (Study: Social media can alter research priorities) about a commentary in Nature decrying the role of patients in pushing certain research priorities.

Paulo Zamboni, an Italian surgeon, suggested in 2008 that MS was not an autoimmune disease but rather a vascular disease caused by blockages in the brain. He proposed unblocking the veins by mechanically widening them – what he calls the “liberation procedure.”

After the press and Facebook groups in Canada picked up on this finding, there was a push for publicly funded trials and access to treatment. This was so even though it wasn’t advocated by the MS Society in Canada or leading MS physicians.

The [Nature] authors said unconventional and unproven treatments have long been proposed and tried for many terrible diseases. “Now tools such as Facebook and YouTube make it considerably more likely that patients learn about such therapies, without necessarily learning about their potential limitations.”

[T]raditional approaches for communicating scientific findings to the public and policy advisers such as reports, briefing notes, news releases and news conferences, are insufficient. “When patient groups are using social media to advocate and mobilize, scientists must employ similarly effective tools to communicate.”

The authors advocate efforts to improve health care literacy of the public, politicians and media –especially now that less deference is given to experts.

I can understand how the authors are upset at having their world turned upside down, but consider how they published this push for “effective tools to communicate.” I decided to read the original Nature article to see what the authors actually said, rather than letting HealthcareIT News filter it for me. So I had to laugh when I saw that Nature charges $32 to access this one or two page editorial, ironically entitled “The rise of people power.”  I don’t think the authors have quite taken their lesson to heart on this one. Considering the topic could they at least have considered publication in a leading open access journal such as PLoS or insisted this article be made freely available?

Before researchers complain too much about patient advocacy efforts, let them examine their profession’s own conscience to ask:

• Is their choice of research topics purely driven by what’s best for patients? Or do other factors also come into play such as a desire to publish in prestigious journals, rivalries with colleagues, commercial sponsorship, or intellectual curiosity?
• If they or a close relative had a serious illness, would lack of endorsement by a disease society or establishment physicians who have devoted their careers to existing approaches be enough to dissuade them from pursuing a potential cure? Or would they take into account the natural tendency of such groups to perpetuate the status quo and retard innovation, especially when radical ideas come from outside the field?

I’m glad the authors are starting to recognize that patients have to be engaged and taken seriously. But their approach still comes across as patronizing.

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There’s a chance that we’re starting to see a convergence of opinion on Medicare among Democrats and Republicans on Capitol Hill. I know the recent bickering makes this seem like an odd contention, but consider the following:

• In recent decades Republicans have done a great job of tarring Democrats with the “tax and spend” label while being fiscally irresponsible themselves. Republicans criticized Carter era deficits, and then proceeded to run up much more startling deficits under President Reagan. Bill Clinton had us looking at surpluses(!) as far as the eye could see until W came in and sent the red ink soaring –partly through tax cuts but largely by boosting spending. When Republicans continued brandishing the “tax and spend” cudgel, Democrats figured they were suckers to go the Clinton route of fiscal responsibility and get no credit for it
• We’re now at the point where the size of the national debt actually matters. The only way to bring it under control is to bring deficits down. This is something on which Republicans and Democrats can agree. So now you’ve got both parties committed to the idea of deficit reduction; that just hasn’t been the case before.
• There are still big differences on how to do it, but approaches –at least on Medicare– are likely to converge once the challenge is faced in a serious way, i.e., with an eye toward solving the problem rather than pandering to one group or another. In the case of Medicare, Republicans are likely to move toward the Democrats’ position over time.
• The Ryan budget proposal is the beginning of this convergence. Rather than cynically trying to scare seniors by claiming Democrats are taking away Medicare (as his colleagues have been doing up til now), Ryan is explicitly acknowledging that Medicare spending can’t continue on its current path. His frank talk is now earning some serious backlash in “town hall meetings” –the same venues where opponents of the Patient Protection and Affordable Care Act (PPACA) took out their wrath on Democrats in the run-up to health reform’s passage. It’s actually good that Republicans are getting a taste of the same medicine they were dishing out  –maybe it will make the GOP think twice about starting up those tactics in the future.
• Once Republicans decide to think seriously about Medicare costs, they’ll find that the Ryan plan isn’t going to do the trick. A loosely regulated private health insurance industry like Ryan envisions can’t and won’t deal with societal priorities like enrolling sick people for premiums they can afford. At a minimum that’s going to lead Republicans toward similar insurance industry reforms as PPACA (e.g., guaranteed issue, limitations on medical underwriting) in order to preserve Medicare’s universal coverage of the elderly
• If well-informed, constructive parties –including the Congressional Budget Office, the media, policy wonks, and maybe even presidential candidates– engage on these issues they may yet get toward a national consensus. One reason I’d like to see Mitt Romney get the Republican nomination is it might actually engender a productive debate about Medicare. (Then again Mitt has disappointed in the past.)

I’m getting ahead of myself, but I also think it’s possible that in about 10 years we’ll see significant support among Democrats and Republicans for a single payer system. But that will have to be the topic for a future post.

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The Incidental Economist hosts the latest Health Wonk Review. “Spring Has Sprung and Mud Still Flung” Edition.

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Republicans are reaping what they sowed. In the health care reform debate the GOP cynically tried to scare seniors into opposing the Patient Protection and Affordable Care Act (PPACA) on the grounds that it would undermine Medicare benefits. They packed town hall meetings with angry tea party patriots to make their point.

Now that some Republicans such as Paul Ryan want to have an adult discussion about Medicare financing they’re finding that seniors are worked up and that Democrats are eager for payback. See Voters Attack Republicans on Medicare in the New York Times for details. I think the reaction is entirely reasonable. For the good of the country I hope we’re able to engage in a productive, objective manner on the topic, but I’m not optimistic.

Republicans could begin to atone for their sins by repealing Medicare Part D, the astoundingly unfunded outpatient prescription drug benefit. But I’m not holding my breath.

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The federal government is trying to force out the CEO of Forest Labs and that’s terribly troubling. From the Wall Street Journal (U.S. Effort to Remove Drug CEO Jolts Firms):

The Health and Human Services department startled drug makers last year when the agency said it would start invoking a little-used administrative policy under the Social Security Act against pharmaceutical executives. This policy allows officials to bar corporate leaders from health-industry companies doing business with the government, if a drug company is guilty of criminal misconduct. The agency said a chief executive or other leader can be banned even if he or she had no knowledge of a company’s criminal actions. Retaining a banned executive can trigger a company’s exclusion from government business.

In this case Forest CEO Howard Solomon hasn’t been accused of anything, but if the government bans him from doing business with it then he is effectively fired. That’s because government programs such as Medicare, Medicaid and the Veterans Administration are an important part of the business.

It’s really not a good idea for the government to meddle this way, and it sets a bad precedent for other companies in health care and other industries. The government’s motivation seems to be that large monetary penalties aren’t doing the job. But the result will be to stultify companies in the industry at a time when we really need innovtion.

Conservatives may argue that the problem stems from Obama’s policies that grow the federal role as a buyer of health care products and services. But that’s not really the case. The big growth in pharma purchases came as a result of the Republican-led Medicare Part D drug benefit. And in any case Medicaid and other federal purchases of drugs were already sufficient to sway companies’ decision making.

The federal overreach is consistent with the post 9/11 attitude that the ends justify the means, especially when it comes to federal action against fraud. It’s a shame we’ve gotten to this point.

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I was pleased to see one of my favorite companies, PatientsLikeMe, win such wide attention yesterday for its role in an observational study of lithium for ALS. The study, published in Nature Biotechnology, was noteworthy because it used the PatientsLikeMe network of patients for the research. As a result the study was designed, launched, analyzed and reported in nine months compared to two years or so for a typical trial approach. The difference between nine months and two years is huge for ALS patients, whose median time from diagnosis to death is 2-5 years.

The paper and articles reporting on it noted the value of patients taking an active role in getting the study going, but I’m not sure the medical and scientific community is quite ready to grant patients the broader role in clinical trials that they deserve. Many patients with life-threatening illnesses such as ALS are extremely well informed and motivated to make progress against their disease. Researchers and clinicians don’t always share the same degree of focus or urgency; even when they do they don’t have the patient perspective.

HIV patients, working through the Forum for Collaborative HIV Research and other channels, have demonstrated the highly productive role that engaged patients can play in study design, patient recruitment and retention, interpretation and dissemination of results. They also do a great job of reminding researchers and trial sponsors about the urgency and seriousness of the work.

I had an email exchange with PatientsLikeMe president Ben Heywood on this topic, and he seems to agree with me. He wrote:

“In the long run, capturing the experiments run everyday by physicians and their patients can significantly improve the overall understanding of treatments and disease.  There is tremendous value in reconnecting researchers to the patients they are working hard to serve by changing the norm from doing research ON patients to doing research WITH patients.”

As researchers and patients gain experience working in true collaboration I’m confident we’ll see quality improve and drug development accelerate.

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On today’s New York Times Op-Ed page (A Slogan, Not a Plan) conservatives Ramesh Ponnuru and Yuval Levin assert:

Republicans have an effective slogan for their health care agenda: “repeal and replace.” The problem is, they can agree only on the first half; agreeing on what to put in place of last year’s health care law is the hard part. Even Representative Paul Ryan’s bold budget proposal avoids the issue.

Republicans can’t keep ducking through the 2012 elections. Fortunately, there’s a solution hidden in plain sight: a tax credit for health insurance.

Jonathan Cohn and Yglesias both do a good job of picking apart the logic of the approach. Cohn characterizes the plan as a weaker, slower version of John McCain’s ineffectual, expensive 2008 presidential platform. Yglesias highlights specific problems related to adverse selection. I have several additional critiques I could offer, but why bother? Only wonks are reading our posts and I don’t expect many readers to change their mind on the subject.

I disagree with the op-ed authors’ contention that “Republicans can’t keep ducking.” In fact if Republicans wrestle seriously with health care reform they’re going to struggle to come to consensus and at best will agree on a plan that will displease a lot of people, including many of their most fervent supporters. The current GOP approach of attacking every real and imagined facet of the Patient Protection and Affordable Care Act has a lot more to recommend it politically, and therefore I expect to see it continue.

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A notable finding from a RAND study How Do Consumer-Directed Health Plans Affect Vulnerable Populations? is that members in high deductible plans receive fewer preventive services, such as mammography, after switching from traditional plans. That seems odd at first blush since preventive services aren’t subject to the deductible.

The authors suggest a couple of plausible reasons: members aren’t familiar with the rules (so may think preventive services aren’t covered) and some people may miss out on other appointments (that are subject to the deductible) where the preventive services might be suggested.

Those are reasonable explanation, which demonstrate real limitations of these plans. But I can think of a couple of other reasons:

• Screening tests often lead to more expensive and invasive follow-up tests and treatments that may be subject to the deductible. So it’s not just that members are wrongly worried about the cost of the screening test. They may be rightly concerned about what comes next
• High deductible plans get members thinking more keenly about the value of services received. They may apply their own judgments about the necessity of certain recommended preventive services. For example they may hew to the USPSTF’s recommendations on mammograms rather than the wider use that most plans will pay for

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Whenever I’m in Canada I enjoy reading what the newspapers have to say about health care. Today’s Montreal Gazette leads with Hip surgery wait times fail seniors and continues inside with Waits longest in cities for seniors’ hip surgery.

Only 45 per cent of Montrealers over 65 have surgery to repair hip fractures within a day or two – the medically ideal wait time. In Laval, the figure is 32.6 per cent, the lowest in the province, while in Abitibi-Témiscamingue it is 94.2 per cent. The results contradict Health Minister Yves Bolduc’s position that Montreal has better access to specialized medical services than rural or remote areas.

The Gazette‘s take is clearly that its readers are getting a raw deal. Yet from the standpoint of a visiting American there are a lot more interesting insights to be gleaned:

• It’s amazing that rural and remote areas have better access to service than the big cities. That’s due to how permits for specialists are allocated geographically
• There’s no breakdown by payer, e.g., Medicare, Medicaid, commercial, uninsured because it’s not relevant. Everyone has medicare (note the lowercase m, which somehow fits with the idea that universal coverage is taken for granted)
• The data come from a comprehensive look at all the hip surgeries around the country (and for that matter for a lot of other different procedures) rather than from a single-center study of a couple hundred people as would be typical in the US. They actually have comparable information on access across geographic areas and time for all patients
• The government is actually being held accountable for the results, and despite the sensationalistic headline the quality of the debate in the general media is a lot higher than the “rationing” and “death panel” noise one hears back home
• In the bigger picture, about 80 percent of Canadians are receiving “priority procedures” within the recommended time frames

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A HealthLeaders article by Gienna Shaw notes that some physicians are reluctant to use computerized decision support (CDS) tools because they fear losing the respect of patients and colleagues. There’s some evidence to support this concern:

In one [study], even tech-savvy undergraduate and graduate computer science students preferred physicians who rely on intuition instead of computer aids.

“Patients object when they ask their doctor a question and then she or he immediately types in the question into their laptop and then reads back the answer. It gives patients the feeling that they just paid a $25 copay to have someone Google something for them,” [study author James] Wolf says.

Shaw argues that this is a transient phenomenon in any case because soon everyone will use CDS as payers demand it and the tools get built in to electronic medical records in a way that’s invisible to patients. She’s probably right, but she’s sparked some interesting thoughts.

I prefer physicians who uses sophisticated decision support tools such as SimulConsult, which allows physicians to extend their expert knowledge to make differential diagnoses of rare conditions that even excellent, experienced specialists may see rarely in the course of a career. Doctors are trained to see horses, but there are a lot of zebras out there that are being missed as a result.

Other point of care information tools, such as UpToDate are terrific for keeping current with the latest knowledge. I’m always happy for a doctor to use UpToDate to confirm what he already knows or to find out if there are new developments.

I’ve been favorably disposed toward computerized decision support ever since a summer job at a VA hospital 30 years ago where I programmed an early tool in MUMPS on a DEC PDP 11/34. Yet I can understand where Wolf’s skeptical computer science students are coming from based on my own experience with computerized tools. I’m not a doctor so I can’t relate these directly to medicine, but here are a couple of my own observations for what they’re worth:

• I love using my GPS when visiting new places and to find shortcuts. It’s great because it lets me explore new places I would have hesitated to drive to in the past. But excessive reliance on the GPS may have dulled my map reading ability, sense of direction, and ability to learn new routes. I’ll admit that I sometimes end up taking a less optimal route just because the GPS suggests it.
• In the olden days doing research required some thought as to the best way to frame the question, what data sources to pursue and the most promising, efficient way to find information. Now the easiest thing to do is usually to type whatever the question is in to Google and see what pops up first. I still know how to go well beyond that but it’s a skill that seems to be eroding.

These tools tend to level the playing field, bring up low performers and reduce costs. The best professionals –in health care or any field– are the ones who can build from the easily available knowledge and add something differentiated on top.

There may be some doctors who really are just typing questions in to Google and reading out the results –although even there they are likely adding value by drawing on their training and experience. The good news is that routine tasks can now be performed by less expensive people or machines. The problems that remain are tougher, which gives ample opportunity for medical experts to earn their keep by applying human judgment that takes into account all that the decision support system can tell them –and then goes beyond.

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