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Making Sense of the Debate Over Patient Access to Medical Information

“When it comes to health care, information is power.”

This comment from U.S. Department of Health & Human Services Secretary Kathleen Sebelius has sparked a heated debate among doctors and patient advocates about the merits and drawbacks of giving patients easy access to their lab results, doctors’ notes and other personal medical information. A deliberation in this month’s issue of SGIM Forum, the newsletter of the Society of General Internal Medicine (SGIM), is emblematic of how doctors’ and patients’ views on transparency vary.

Internist Douglas P. Olson, MD says it’s too early to offer patients electronic access to their lab results or medical records and that without systemic changes it could actually undermine the patient-doctor relationship lists among his concerns the potential to confuse or worry patients; a lack of evidence showing the positive effect on healthcare safety and quality; and the increased demands on doctors’ time to respond to patient questions.

These concerns are valid and shared by many other doctors. In a recent survey by OpenNotes―a project supported by the Robert Wood Johnson Foundation’s Pioneer Portfolio that enables doctors to share their visit notes with patients online―doctors were asked about their expectations and attitudes toward sharing electronic medical notes. The survey was conducted before doctors engaged with OpenNotes. Responses revealed doctors were worried about the impact on workflow and weren’t convinced that it would make a difference to patients’ health.

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Price Variation and Confidentiality in the Market for Medical Devices

The Government Accountability Office (GAO) recently released a report that cites “substantial variation” in the prices paid for implantable medical devices in the Medicare program, and a lack of robust data needed to properly compare the prices paid for these devices across surveyed hospitals. A key driver of both of these findings is the existence of confidentiality clauses in medical device purchasing contracts that prohibit hospitals from sharing prices with third parties, including physicians, the health plans that pay for these devices, and patients.

It was with a sense of déjà-vu that I read this report; in 2010, UC Berkeley professor James Robinson and I published a series of briefs looking at variation in implantable device prices in California hospitals as part of a joint Value-Based Purchasing of Medical Devices project between the Berkeley Center for Health Technology and the Integrated Healthcare Association (IHA). This project included data collection on device costs, total surgical costs, complications, and length of stay for seven orthopedic and cardiac procedures in 45 California hospitals.

The data, as well as a series of IHA-sponsored roundtable conversations with stakeholders, found the same thing that the GAO report finds: a lack of transparency in device prices, sometimes driven by clauses that prohibit hospitals from disclosing the prices paid for devices, a lack of alignment between hospitals and the physicians practicing within their facilities, and very substantial variation in both the prices paid for devices and the total costs of the procedures used to implant these devices. For example, the average cost hospitals paid for knee implants ranged from $3,408 to $10,830, and the average paid for implantable cardioverter-defibrillators ranged from $19,578 to $35,916. There was also a substantial amount of within-hospital variation in device prices.

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Privacy in the Age of Big Data

We live in an age of “big data.” Data has become the raw material of production, a new source of immense economic and social value. Advances in data mining and analytics and the massive increase in computing power and data storage capacity have expanded, by orders of magnitude, the scope of information available to businesses, government, and individuals.[1] In addition, the increasing number of people, devices, and sensors that are now connected by digital networks has revolutionized the ability to generate, communicate, share, and access data.[2] Data create enormous value for the global economy, driving innovation, productivity, efficiency, and growth. At the same time, the “data deluge” presents privacy concerns that could stir a regulatory backlash, dampening the data economy and stifling innovation.[3] In order to craft a balance between beneficial uses of data and the protection of individual privacy, policymakers must address some of the most fundamental concepts of privacy law, including the definition of “personally identifiable information,” the role of consent, and the principles of purpose limitation and data minimization.

Big Data: Big Benefits

The uses of big data can be transformative, and the possible uses of the data can be difficult to anticipate at the time of initial collection. For example, the discovery of Vioxx’s adverse effects, which led to its withdrawal from the market, was made possible by the analysis of clinical and cost data collected by Kaiser Permanente, a California-based managed-care consortium. Had Kaiser Permanente not connected these clinical and cost data, researchers might not have been able to attribute 27,000 cardiac arrest deaths occurring between 1999 and 2003 to use of Vioxx.[4] Another oft-cited example is Google Flu Trends, a service that predicts and locates outbreaks of the flu by making use of information—aggregate search queries—not originally collected with this innovative application in mind.[5] Of course, early detection of disease, when followed by rapid response, can reduce the impact of both seasonal and pandemic influenza.

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Minders of the Gap

When British Prime Minister David Cameron defended his reforms of the National Health Service against a series of aggressive attacks from critics this week, he fell back on a familiar argument – that his reforms  would hand control from bureaucrats to clinicians. But the reforms don’t, in fact, hand power to clinicians generally – they hand responsibility for commissioning in the NHS largely to general practitioners (GPs), our answer to US family practitioners. I think it’s worth spending a bit of time explaining quite why, because as other bloggers have written on this site, US policy experts often find it surprising that in the UK such a high status is afforded to family medicine.

GPs in the UK often earn more than their specialist colleagues, and they do so because they have a much more central and wide-ranging role in the British NHS than family practitioners do in the American healthcare system. GPs are in traditional terms, the gatekeepers, and in updated terms, the navigators for the NHS. Patients can’t simply book themselves in to see a hospital doctor – the great majority of first contacts with the health system are with the GP practice. GPs are highly trained, following their medical degrees with two foundation years and then three years of specific GP training (with pressure to extend that to four or even five years).

Although they’re generalists, the profession is regarded as a specialism – and its expertise is measured partly by its ability to manage as many patients as possible in primary care, without the need for referral to hospital. GP care has proved highly cost-effective, both by controlling the numbers of patients who access expensive hospital treatment, and by directing patients to the most appropriate part of the NHS when they do need specialist attention. And in an NHS facing unprecedented cost pressures, that’s given them an enormous amount of power, and is about to gain them a whole load more.

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Startups: The Other Health Technology Revolution

These days my physician colleagues and I are up to our necks in a health technology revolution.  To be honest, its not as captivating as Pinterest or socially-engaging as a Google Huddle but to be sure your life will depend on it.  The revolution ushered in by electronic health record (EHR) is less about the technology than the widespread impact it will have on patient care.  Rather than digging through stacks of paper charts, your doctor will have ready access to all of your health history on a digital device.  And not just your health history, soon I will be able to combine it with the history of other patients in my practice: the digitized data will allow me to track the childhood obesity rate in my clinic and trend it over time with just a click (or tap).  But look out, there are glimmers of another emerging health tech revolution.

I recently attended the Health Innovation Summit organized by Rock Health, a seed accelerator for health startups based in San Francisco.  Coming from the bureaucratic and comparatively stagnant world of health care systems, this event made me feel like I could dream again.  Speakers provided pearls of wisdom for an engaging design.  Panels offered strategic advice to attract VC and Angel funding.  Most exciting was the chance to hear from entrepreneurs, each of whom offered their own incremental solution to improve health.

Take something like Cardiio, which measures heart rate in a few seconds by scanning your face.  Imagine how future related technologies could replace monitoring wires and tubes thereby improving comfort during a hospitalization and reducing hospital acquired infections.

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No Free Lunch. No Free Contraception.

The otherworldy Obama Administration solution to the contraception firestorm might work politically but it makes no sense in the real world.

The President, hoping to quell a growing political firestorm, today announced a new policy that no longer requires religiously affiliated organizations to provide employees with contraception coverage in health-insurance plans.

Under the new policy, insurance companies will be required to offer free contraception for their employees and dependents. The administration’s idea is to shift the onus for the coverage from the employer to the insurer. Catholic leaders, and lots of other people, had objected to the requirement, which exempted churches but not hospitals, charities and universities with religious affiliations.

So, let’s just play a game here. The religious organization just pretends that it has nothing to do with it but the insurance company pays for it anyway. Hey, the insurance companies are rich.

Of course there is a cost. Today, contraception is almost universally covered in health insurance policies. The argument that forcing insurers to pay for it, without deductibles and copays, saves money because it avoids pregnancy costs is just plain silly.

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The Audacity of Dupe

Let me get this straight. Catholic institutions won’t have to pay for contraception coverage in their health insurance? Instead, their health insurers will provide it for free? Did I hear that right?

The President seems to have found the long elusive free lunch. If he has, hand him his Nobel Prize in Economics now; no economist will ever top that. (That would make him just the fifth person to win two Nobel Prizes. Such greatness inspires.) I am afraid that the Nobel Prize committee will have more work to do, as the free lunch will remain as scarce as the unicorn. Just bear in mind that health insurers charge different prices for all of their clients. How is anyone to know whether they are providing contraception to some Catholic institution for free? Will we have a federal agency auditing whether an insurer’s 6.743 percent price increase should have been 6.682 percent? And is this new rule even Constitutional? Since when can the government force private businesses to give away their products? I guess a government that believes it can mandate that consumers purchase contraception coverage regardless of the price also believes that it can mandate insurers set the price for contraception coverage to zero.

And suppose insurers really do provide contraception for free to Catholic institutions, but not for any others. This gives the Catholic institutions a competitive advantage in labor markets. Mr. President, may I suggest that as long as you are giving away stuff to employees at Catholic institutions, why not force Apple to give away iPads to Northwestern University employees? (Most of them voted for you and surely deserve it!) Apparently all it takes is an executive order. What did Mel Brooks say about this? Oh yeah, “It’s good to be the king.”

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Context Is Everything

A few weeks ago, I had the opportunity to talk with an innovative company about a new product.  I make it a policy not to endorse any particular company or product on this blog, so this is not an endorsement.  Rather it is a fascinating story that tells us lots about human nature and gives us clues on how we should design healthcare programs, apps, etc. as we move into the world of patient engagement and accountability.  And we are moving there. Whether your focus is achieving meaningful use of your EMR (increasingly we’re going to be graded on how we engage our patients in this regard), the journey to becoming an Accountable Care Organization (as we enter an environment where we’re compensated for quality and efficiency, patient engagement becomes key) or simply that you realize that we don’t have enough healthcare providers to take care of all those folks who need it (in this case, patient engagement becomes a tool to give patients the opportunity to be their own providers, taking work off of our beleaguered primary care workforce), patient engagement is all the rage.

Right out of the gate, we health care providers have a big hill to climb.  We are the ones who remind you that you are sick. Who wants to be engaged with that?  Once patients get into the mindset of being sick, the context becomes pain, suffering, inconvenience, depression, time out of work, rehabilitation, and on and on. It’s no wonder that patients don’t engage much (other than the occasional masochist among us).  And the conversation immediately gravitates to whether insurance will pay or not. We’ve observed patients in our connected health programs who are happy to go to the sporting goods store to fork over their own money for a heart rate monitor so they can watch their heart rate during a work out, but baulk at paying for a blood pressure monitor to be part of a hypertension program.  After all, fitness is your own business, but when we’re talking about sickness your insurer owes you ….

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Will People Eat Less If You Ask Them to?

There are times I wish I had a macro for the beginning of a post on obesity. Some way to say obesity is bad, obesity is prevalent, and nothing seems to work. You know the drill.

But there’s a new study in Health Affairs that was surprisingly promising:

We performed three related field experiments at a single fast-food restaurant to determine whether these reported sentiments could be translated into a strategy to alter calorie consumption. All of the experiments addressed three important elements of eating behavior.

First, do people spontaneously request smaller portions—that is, even if smaller portions are not specifically noted as an option on a menu or signage? Second, do people accept explicit spoken offers to take smaller portions in order to reduce calories? Third, does taking a smaller portion of one meal component lead to indulgence in other meal components, so that the calorie “savings” from downsizing are immediately lost?

Each experiment addressed an additional question. In experiment 1, we explored whether offering a nominal (twenty-five-cent) discount for downsizing would result in more customers’ accepting the offer than offering no discount. In experiment 2, we examined whether offering an opportunity to accept a smaller portion would be more effective than providing calorie labels in encouraging moderation. In experiment 3, we investigated whether downsizing appealed only to customers who would otherwise have thrown away uneaten food, thereby affecting calories ordered but not calories consumed.

Let’s start with experiment 1. First, they measured how many customers would spontaneously request a smaller portion of a high-calorie, high-starch side dish. Not surprisingly, only 1% did. But if customers were asked, on the other hand, one third accepted the offer, regardless of whether a discount was offered. What’s more, those that did downsize did not compensate by up-sizing any other portions of the meal. Those that downsized ordered significantly fewer calories, 100 fewer on average.
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Obama’s Broken Promises

I didn’t vote for Barack Obama. But like a lot of Americans, I was hopeful about his presidency.

Just as it took a Republican to thaw our relationship with China, it will probably take a Democrat to reform our entitlement programs. Again and again, Obama promised to step up to the challenge. Then he left the country at the altar and pursued partisan politics instead.

Bill Clinton was going to be the first Democratic president to tackle entitlement spending. Although the effort has been completely ignored by the establishment media, Clinton was planning historic reforms during his second term. These were to include private accounts under Social Security and vouchers for Medicare.

If that doesn’t knock your socks off, you haven’t been paying attention. When Republicans propose these things, Democrats invariably claim the GOP is trying to destroy the social safety net and leave the elderly to fend for themselves.

Clinton was serious. He had his Treasury Department draw up detailed plans. In fact, when Pat Moynihan, the colorful intellectual senator from New York, was appointed by President George W. Bush to co-chair the Social Security reform commission, the first thing he did was ask the Treasury to send him the Clinton-era planning documents so that the commission could continue where Clinton’s policy team left off.

So what derailed Bill Clinton’s ambitious reform agenda? Monica Lewinsky. Left wing Democrats in Congress threatened to throw him under the bus in the impeachment proceedings unless he completely dropped the reform ideas they regarded as heresy. Unfortunately for the country, he obliged.

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