Category Archives: policy

Terry Barnes on Commission of Audit

But why does he leave private health insurers untouched?

http://www.afr.com/p/business/healthcare2-0/the_audit_missed_healthcare_costs_pDVkJjKdrNlkAWzF1vuFGP

The audit missed healthcare costs

TERRY BARNES

There’s a well-worn joke about a lost traveller standing at a crossroads and asking a grizzled old Irishman for directions. “To be sure,” the Irishman replies. “I wouldn’t start from here.”

Prime Minister Tony Abbott, Treasurer Joe Hockey and Finance Minister Mathias Cormann established the National Commission of Audit to give directions on more sensible, structured and sustainable Commonwealth and federal-funded programs and services. But if the commission’s report is the starting point to a better healthcare future, like the Irishman I wouldn’t start from here either.

Overall, an unavoidable impression is that the commission, headed by then-Business Council of Australia chairman Tony Shepherd, didn’t fully grasp Australia’s complex, often economically irrational, and, above all, highly political healthcare infrastructure. Rather than do much original policy thinking, it sought largely to put its own stamp on policy debates already under way, including Medicare co-payments; widening the roles of private health insurance and health professionals other than doctors in primary care; and improving federal-state and public-private co-ordination of effort.

The commission’s narrative attempts to connect the dots between various elements of the Australian healthcare picture – public and private, federal and state, and acute, primary and preventive care. In doing so, however, it misses the reality that the Australian healthcare system is not a system at all. Instead, there’s a tangle of loose and fractious associations of providers, funders and consumers, all competing aggressively for resources and dominance, all believing they know best and those wearing white clinical coats, typified by the Australian Medical Association and Pharmacy Guild of Australia, bully anyone who opposes their agendas

HEALTHCARE SHOULD FOCUS ON INDIVIDUALS

 

In its naivete, the commission recommended that Health Minister Peter Dutton should “identify a framework that brings together all aspects of the health system – public and private, hospital and community-based – to support the organisation and delivery of healthcare in a way that tightly focuses on individuals”. Sounds easy, but the problem is Dutton, as minister, is not the supreme controller of an ordered system but herder-in-chief of a multitude of feral, rent-seeking cats, including the states and territories and their ravenous public hospitals. Dutton may have the Commonwealth’s immense political and funding leverage, but like King Canute, he cannot command the tempest of interests.

In 2008-10, former prime minister Kevin Rudd sought to do exactly what the Commission of Audit recommended, by way of his National Health and Hospitals Reform Commission. Rudd’s raising health reform expectations so high, coupled with his subsequent failure to deliver, is a major reason why he is a former prime minister. Abbott and Dutton are very mindful of his hubristic lesson.

Indeed, a political fact of life is that there is a broad national consensus that Medicare, as a universal public health insurance scheme, is reasonably fair and effective. As the overheated debate about a modest $6 co-payment on bulk-billed GP services shows, the slightest proposed adjustments to Medicare’s fabric bring outraged howls not only from healthcare ayatollahs, but from voters fearing change to a beloved institution. Even incremental Medicare reform requires considerable political courage.

Dutton, Abbott and Hockey bravely have flagged Medicare and wider health structural reform as a high priority for their government. But such structural reform must be measured and gradual, delicately balancing entrenched Australian notions of a fair go with the philosophical and economic goal of encouraging individuals to take greater personal responsibility for their own healthcare consumption and choices. As the Abbott government now knows, it is tough enough selling economically self-evident concepts, like modestly increasing pay-as-you-go in Medicare and the Pharmaceutical Benefits Scheme, in the teeth of ferocious opposition.

AMERICANISING OUR HEALTHCARE SYSTEM

 

This is why the commission’s showstopper recommendation, that higher income earners be compelled to take out private health insurance in place of Medicare, will gather dust. Most Australians see private health insurance as complementing Medicare, not replacing it. Labor and the Greens haven’t hesitated to demonise the commission as Americanising Australian healthcare, and no sane government will go there.

There are, however, some gems in the report. Besides supporting Medicare co-payments (although proposing a ridiculously high $15 figure and inadequate protections for the less well-off), the commission’s recommendations on partially risk-rated health insurance for unhealthy voluntary behaviours such as smoking; taming the health bureaucracy beast; revamping the Pharmaceutical Benefits Scheme; and breaking the Pharmacy Guild’s ownership and location cartels, are timely and welcome. But on health policy generally, the report falls short. Nevertheless, and as did John Howard and Peter Costello in 1996, on budget night Abbott, Dutton, Hockey and Cormann will declare that what they announce isn’t half as bad as the commission of audit’s more radical recommendations. That’s the basic truth of this exercise: it gives political and policy cover to a new government striving to sell a difficult, inherited fiscal repair task to a bruised, wary and sceptical public.

Terry Barnes runs consultancy Cormorant Policy Advice, and wrote the Australian Centre for Health Research’s proposal to reintroduce co-payments on bulk-billed general practitioner services

Visit afr.com/healthcare2-0 for more health coverage.

The Australian Financial Review

PHI dysfunction starting to gel…

Email from me to Anne-marie regarding PHI and Commission of Audit ideas…

Thanks Anne-marie… last week was so busy, but at least it was a good busy, filled as it was with so many excellent events and conversations, quite often featuring you! Glad to hear that the club delivered on expectations… maybe Steve will be up for some insurrection? Or maybe not.

[the following early morning rant is off-the-record on account of my current employment and it still being a bit rough, but am happy to explore it further with you as required J]

On the modelling question, that’s more on the economic modelling side – something we’re tooling up for with Federico Girosi and Jane Hall, but haven’t quite started on. Ian McAuley and John Menadue have been presenting solid thinking about PHI for a while and would be worthwhile speaking with, particularly if you were looking to confirm your suspicions? Off the top of my head, I can’t think of anyone who could actually back-in the COA’s assumptions, as I’ve never heard anyone credible (with the potential exception of Paul Gross – though unsure how credible he is) put forward that point of view, mainly because it is ideologically driven, rather than evidence based. Indeed, the closer I get to the PHI data, the PHI businesses and the people who run them, the more certain I am that PHI can only ever be inflationary – especially when positioned as a duplication of a public insurance scheme (as per that graph from the SMH that Jim Gillespie spoke to at the event last week), as it allows clinicians to select whichever system suits their interests best, making them the customer rather than the patient.

My back-of-envelope rationale:

PHIs market themselves as honest brokers in the health system, but in reality, benefit directly from health inflation, acting as hemi-bureaucracies which take a 13% clip of disbursements that pass through them. In Australia, this dynamic is emphasised by their mutual structure, as the lack of profit motive leads to a lack of interest in containing anyone’s costs, especially when the Minister mandates premium increases based on demonstration of increased costs!!?? The smaller PHIs have no market power, so aim to please hospitals and doctors, thus making providers the customers, rather than their patients. This all has the effect of distancing patients from value the market generates, despite the fact they are the ones who fund it. I can’t think of a more diabolical arrangement than the one we’ve got. I’m disappointed that conservatives are willing to trade this downside for the illusory benefits of choice (which don’t actually exist because the basis on which we might choose are health service have nothing to do with the quality of that service). In reality, the choice argument is just a smoke screen for queue jumping, something conservatives aren’t to keen on when it came to asylum seeker policy.

As a footnote, it’s interesting to see the behaviour of the non-mutual PHIs – Medibank and NIB. They tend to be far more innovative and disruptive towards conventional health service models, mainly in an attempt to position themselves as the customers served by doctors and hospitals, while still being funded by their members. Unfortunately, their business model still ultimately relies on cost containment AND premium growth, and so also ends up also being inflationary – the main reason the US is the situation it’s in.

Wrapping the diatribe up, ideally a health market should be singularly focused on improving the health of the population that funds it. I’d estimate the current ranking of value captured by various actors looks something like this:

  1. insurers
  2. hospitals
  3. bureaucrats
  4. politicians
  5. doctors
  6. patients
  7. nurses
  8. allied health professionals

Under the previous administration, it probably looked more like this:

  1. bureaucrats
  2. politicians
  3. insurers
  4. doctors
  5. hospitals
  6. nurses
  7. patients
  8. allied health professionals

Ultimately, all forms of private health insurance make the providers the customers while the population carries the can. Interventions which position the population as customers should be the preference. Medicare was a big, necessary but not sufficient step in that direction.

I reckon some of this can inform some interesting health market design that could support a far more advanced and efficient health system. We’ve previously discussed that we’ve got 6 years to bring this to maturity, though if things keep tracking like they have been, it could be sooner.

Let me know your thoughts?

Cheers, Paul

 

From: Anne-Marie Boxall [mailto:ABoxall@ahha.asn.au]
Sent: Monday, 5 May 2014 6:08 PM
To: Paul Nicolarakis (paul.nicolarakis@outlook.com)
Subject: Modelling

No, not the fashion kind (although I am sure you would be great).

A curiosity question – are you and your people able to model something along the lines of the means-tested Medicare scheme proposed by the Commission of Audit? Not sure what data you have, or what is needed to model such a proposal, but it strikes me that the idea rests heavily on the assumption that a market for health insurance would drive down health costs (hospital and primary care and therefore premiums prices). Not quite sure what evidence underpins this assumption (other than economic theory) as Fraser era experiment suggests that it would not work. Just wondering….

Hope you made it to your many subsequent events last week. Dinner at the gentleman’s club was interesting. I think they might also have an age criteria for membership there. 70 plus only.

Regards,

Am

 

 

Dr Anne-marie Boxall
Director, The Deeble Institute for Health Policy Research
Managing Editor, Australian Health Review

Australian Healthcare & Hospitals Association
the voice of public healthcare

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Katz in the SMH

Good to see Dr Katz in the SMH

http://www.smh.com.au/lifestyle/diet-and-fitness/blogs/chew-on-this/do-you-need-tastebud-rehab-20140501-37k6a.html

Do you need tastebud rehab?

Date: May 5, 2014 – 8:03AM
Paula Goodyer is a Walkley award winning health writer
Illustration: Judy Green.

Illustration: Judy Green.

On the face of it the cause of weight gain is simple: we eat too many kilojoules. What’s less simple is fixing the reasons that encourage overeating – a complex mix of factors like the need for comfort, the power of food marketing and inflated portion sizes, none of which have anything to do with hunger.

On top of this is a food supply loaded with amped up flavours that make it easy to overeat. Traditional foods that used to be simple now come with extra layers of flavour and kilojoules – plain yoghurt has been almost kicked out of the chiller cabinet by sweetened yoghurt; scones and hot cross buns come flavoured with chocolate, there’s pizza made, not just with cheese and ham, but ham and bacon and peperoni and barbecue sauce – and we’re embellishing a cup of coffee with caramel syrup.

“What was once a survival advantage in an age when the only sweet foods were breast milk, honey and fruit makes us easy targets for an industry flogging food with more-ish flavours.” 

It’s what Dr David Katz, director of Yale University’s Yale-Griffin Prevention Research Centre in the US, calls the hidden challenge to eating well in the modern world.

This over-flavouring of food can be hard on the waistline, says Katz, explaining that we’re  hardwired to crave sugar and salt, a hangover from our hunter gatherer days when sweet, salty or fatty foods were hard to find but important for survival in a time when the food supply was unpredictable. But what was once a survival advantage in an age when the only sweet foods were breast milk, honey and fruit makes us easy targets for an industry flogging food with more-ish flavours.

“Manufacturers of processed foods are counting on this,” Katz says. “Their goal is nothing short of wanting to profit from our inability to control ourselves when their irresistible food product is in our hands.”

We’re not entirely helpless though. Reliance on very sweet and salty flavours is reversible and inDisease Proof, a new book that provides practical skills for preventing chronic disease, Katz  devotes a chapter to  retraining overstimulated taste buds so that we can appreciate the natural flavours of healthier foods, widen our food preferences and tame food cravings.

It starts with cutting down on added salt and sugar by reducing reliance on processed foods. Making foods like pasta sauce or salad dressing at home rather than buying them off the shelf, for example, gives us more control over the ingredients and flavours we consume. It also helps to get to know the different names that sugar hides under on the labels of packaged foods such as sucrose, fructose, maltose and lactose.  (Katz also fires a shot at one sweetener with a health halo – agave syrup which he describes as a highly concentrated source of fructose with little, if any, health benefits even though it’s promoted as a healthier option to sugar.)

“Your taste buds will adjust to lower thresholds of these flavours, feeling satisfied with lower amounts of sugar, salt and fat,” he says. “Over time, the sweet and salty flavours you used to eat by the handful may taste too sweet or salty.”

As for food cravings, these are less likely if you eat healthy meals and snacks at regular intervals to keep hunger under control, says Katz who also points out that – like nicotine cravings – a food craving will often pass if you can wait it out for a few minutes.

“Research from the University of Exeter in the UK found that a 15 minute brisk walk reduced urges for chocolate among regular chocolate eaters. If you must give in to a craving, have a small portion, then wait. Researchers at Cornell University recently found that hedonic hunger (eating for pleasure) is satisfied by a handful of a tasty food and tends to disappear after 15 minutes so long as the memory of indulgence remains,” he adds.

It’s also possible to tame cravings with healthier foods – if you want something sweet, try something naturally high in sugar like fruit, or try turning the sweet craving off by eating something with a sour or palate cleansing flavour like citrus or mint.

Speaking of sour flavours, Katz also points out that some of the healthiest foods on the planet – like kale, grapefruit, spinach and plain yoghurt have a naturally bitter flavour and if we shun them we miss out on their benefits.  His tips for making them easier on the tastebuds: sweetening the flavour of Brussels sprouts or broccoli by roasting them with a little olive oil to bring out the natural sugars in these vegetables; serving sautéed kale with a little balsamic vinegar and mixing berries and a dash of vanilla extract into plain Greek yoghurt.

Disease Proof by David Katz is published by Penguin, $29.99

New Yorker: What Big Data can’t tell us about health care

A “measured” article.

2% of physicians account for 25% of payments

US Medicare’s release of 9million lines of 2012 outpatient payment data for all 880,000 US doctors.

Amitabh Chandra, a health economist at Harvard, noted that the release of these data may be most useful not to the public or health researchers but to private insurers. These firms keep their own data, but the Medicare dataset is far more vast than any one insurer’s figures. Insurers, Chandra said, may be able to mine these data to build smarter networks that exclude high-cost providers and include high-performing ones. This type of tiered networking, on a grand scale, could actually improve the efficiency of our delivery system. It is this version of transparency-driven tiering, Chandra believes, that could assist in our cost-containment efforts.

http://www.newyorker.com/online/blogs/currency/2014/04/the-medicare-data-dump-and-the-cost-of-care.html

APRIL 23, 2014

WHAT BIG DATA CAN’T TELL US ABOUT HEALTH CARE

Malouin is a family doctor, which is not a specialty that one typically enters hoping to get rich. Delivering primary care is seen by doctors as hard work that earns comparatively little pay, and it is a job that is only getting harder. That’s because the Affordable Care Act, with the broad ambition of containing costs while improving quality, hopes to move away from a fee-for-service model, toward one in which doctors are paid primarily for keeping their patients healthy, a responsibility that will fall largely on primary-care doctors. At this point, nobody quite knows how to make this vision a reality, but Medicare has funded various demonstration projects to test innovations in care—one of which is led by Malouin, who supervises three hundred and eighty primary-care practices that treat a million patients in Michigan. Payments for care improvement from Medicare at all these clinics are made under Malouin’s name, which is how she ended up in dozens of newspaper reports on the data dump.

Even doctors who didn’t end up making headlines like Malouin told me that they felt somewhat exposed by the release of the Medicare payments data. As one friend tweeted, “Imagine if you woke up one morning to find that every person in your profession had their income reported on the New York Times web site.” For nearly thirty-five years, the American Medical Association had worked to keep this information private, after securing a federal court injunction in 1979. Dow Jones, the parent company of the Wall Street Journal, waged a legal battle against the injunction, which was overturned by a federal judge last year.

In the march toward greater price transparency in health care, the data release represents a milestone, though perhaps one more symbolic than substantive. For those who believe that greater price transparency is the key to reining in exorbitant costs and helping patients to become more savvy “health-care consumers,” the data release is a huge victory. Indeed, the early coverage, invariably emphasizing the high spending of a small group of physicians, had a tone of triumph. According to the Times, two per cent of physicians accounted for nearly a quarter of Medicare spending. Ophthalmologists led this small group of high billers, with a large portion of their payments apparently connected to the use of an expensive treatment for macular degeneration. Charts broke down payments by specialty, showing cancer doctors in the lead, while maps of the distribution in spending confirmed long-observed geographic variations. For instance, states like Florida, Texas, and New Jersey consume a large share of Medicare resources.

The calls for price transparency, as a means of bringing down health-care costs, have certainly gained momentum in the past year. In this latest chapter, the hope is that members of the public will be empowered by their access to payments data, and will use this information to identify doctors who are behaving badly, helping to end fraud and profit-driven overuse. In fact, Medicare already conducts internal audits, and the two highest billers in 2012, an ophthalmologist and a cardiologist, both from Florida, were already under federal review. But the third-highest biller, a pathologist, directs a diagnostic company that performs tests for twenty-six other pathologists, which are all billed under his name. Similarly, an oncologist from Newport Beach, California, who billed nine million dollars, explained that all the billing at his practice, which includes five physicians, was under his name, and much of it was directed toward expensive chemotherapy drugs. (One such drug, for advanced melanoma, called ipilimumab, costs about a hundred thousand dollars for four treatments.)

This release includes more than nine million rows of numbers, encompassing more than eight hundred and eighty thousand physicians and other health-care professionals who billed under Medicare Part B—which covers care delivered in an outpatient setting—in 2012. You see their names, their addresses, the services they billed for, how much Medicare reimbursed, and many other details. There are several caveats to interpreting the payment data. First, there is a difference between what Medicare pays and what doctors earn. All doctors face overhead costs: radiation oncologists, for instance, have to pay for technicians and expensive equipment. These doctors were among the highest billers, but eighty-two per cent of their Medicare reimbursements went to covering these expenses. An analysis by the Washington Post found that Medicare paid sixty-four billion dollars to doctors in 2012, of which forty-three per cent went to office overhead, forty-one per cent went to doctor compensation, and thirteen per cent went to drug costs. Even within the Medicare system, these data provide an incomplete picture, as the reimbursements do not include payments within hospital systems (which fall under Medicare Part A) or various Medicare Advantage plans, which cover many seniors but are not included in these numbers.

Despite these caveats, members of the public were encouraged to use these data to make more informed decisions about where to seek care. Indeed, in a press briefing on Wednesday, Jonathan Blum, an administrator at the Centers for Medicare & Medicaid Services, said, “We look forward to making this important, new information available so that consumers, Medicare and other payers can get the best value for their health-care dollar.” The suggestion that these data can allow you truly to comparison-shop, however, is misleading. These data do not tell us anything about the value of care. By definition, the value of health care cannot be measured in dollars spent; it’s about what you get for those dollars, and the Medicare data, however useful, offer little new information of that sort. These numbers tell us, for example, that dermatologists receive higher reimbursements than pediatricians, that cardiologists in Oregon get paid less than their counterparts in New York, and that performing procedures pays better than talking to patients. But they cannot tell us whether doctors provided good care, because being a good doctor sometimes means doing everything, and sometimes it means doing nothing at all.

Let’s say you find that your ophthalmologist performed fewer cataract surgeries than average. It could be because he lacks experience. But it also could be because most of his patients have Medicare Advantage plans that are not included in these data. What about your vascular surgeon, who billed Medicare more than a million dollars last year? He thinks that you need a stent to open a blocked artery in your leg. Do his high numbers indicate a tendency to perform unnecessary surgeries? Maybe. But it is just as likely that his apparently high billing numbers reflect the fact that he performs procedures in his office—covered under Medicare Part B—whereas most of his peers perform similar procedures in hospitals, where their payments aren’t included in these data. And your orthopedist, who performed nearly five hundred hip replacements last year? Surely his high volume suggests that he knows what he is doing? Of all the conclusions that you can make from these data, that high procedural volume signals that better quality is the one with the most empirical backing. But even that is just one signal amid a great deal of noise.

This is not to suggest that the information released earlier this month will not play a role in making it easier for individuals to determine where they can get good care. When I spoke to Jonathan Kolstad, a professor of health-care management at Wharton, he noted that medicine has lagged far behind other industries in giving consumers data to inform their decisions—often because privacy concerns raise significant barriers. This release is a partial step, Kolstad said, but the message “is not that we should be releasing less data. It’s that we should be releasing even more.”

Amitabh Chandra, a health economist at Harvard, noted that the release of these data may be most useful not to the public or health researchers but to private insurers. These firms keep their own data, but the Medicare dataset is far more vast than any one insurer’s figures. Insurers, Chandra said, may be able to mine these data to build smarter networks that exclude high-cost providers and include high-performing ones. This type of tiered networking, on a grand scale, could actually improve the efficiency of our delivery system. It is this version of transparency-driven tiering, Chandra believes, that could assist in our cost-containment efforts.

“I think that we all agree that we have to do something about bending the cost curve,” Chandra said. “But I think we have deluded ourselves into thinking that a challenge as big as bending the cost curve can be collapsed into something as simple as transparency.” He likened the notion that transparency alone could solve the problem to imagining that we could stop global warming by driving hybrids. “We are always drawn to these tantalizing simple arguments. Transparency is just one of the ways we are seeing such aspirational thinking in health care.”

The potential danger in this data dump does not come from the new information it provides but from the old story it risks reinforcing. The existing narrative of American health care goes something like this: greedy physicians perform procedures that patients don’t need and enrich themselves in the process, which is why a third of health-care spending goes to unnecessary care. Now that members of the public can see where their tax dollars are going, they are empowered to rid the system of duplicitous doctors. Indeed, as Blum, the Medicare administrator, emphasized to the press, “We know that there’s waste in the system. We know that there’s fraud in the system. We want the public’s help to review the physician-payment data and report suspected wrongdoing.”

This narrative has many problems. First, the data suggesting the extent of unnecessary care have come under widespread criticism. Economists have also pointed out that other factors, such as high administrative costs and expensive technology, play a greater role in exorbitant costs than overuse. But, even if eliminating waste would, by itself, cure our ailing health-care system, these data do not allow us to identify waste—because waste is not the same as spending a lot. Waste is not even the same as high spending that doesn’t make people healthier. Doctors do that all the time: not because we are trying to enrich ourselves but because we are trying to help our patients. What looks wasteful in retrospect may have looked like a live-saving intervention at the time it was made—and this is as true for expensive chemotherapies that fail to save a life as it is for expensive tests that don’t reveal disease.

That’s why asking the public to use this information to identify waste belies the complexity of physician decision-making. Do physicians respond to financial incentives? Yes. Should we tolerate care that offers patients no benefit? Absolutely not. But are profit motives the primary drivers of physician behavior? My own sense is that most physicians are primarily motivated by trying to do the right thing for their patients. Combing through these data, however, creates the impression that the pecuniary trumps the humane. What else can one conclude from information that only tells you how much physicians do and what they bill?

From an experimental standpoint, unpacking non-financial drivers of physician behavior is far harder than demonstrating that physicians respond to financial incentives. But Kolstad, the Wharton health economist, recently published a study suggesting that wanting to perform better was a far more powerful motivator than wanting to earn more. The paper, which was recently awarded the prestigious Arrow Award for the best study in health economics, examines the behavior of heart surgeons in Pennsylvania. Kolstad took advantage of a report-card system implemented in Pennsylvania in 2006, which created a financial incentive for surgeons to lower their mortality rates because of a need to attract patients. He compared this incentive to simply giving surgeons feedback on their performance and showing them how they compared to their peers. This feedback was four times more powerful in improving physician performance than the financial incentives.

While much more experimentation of this type is necessary in our quest to understand how to improve quality and cut costs, it is no wonder that we cling to the story that we have told. It offers heroes and villains, fosters the American ideal of the individual over any collective authority, and, above all, provides the hopeful illusion that we don’t have to confront the hardest questions that doctors and patients grapple with every day. How much are we willing to spend to save a life? Is a groundbreaking hepatitis C drug worth eighty-four thousand dollars? What about chemotherapy that costs a hundred thousand dollars and may only prolong a life by four months?How much do we value quality of life, or patient satisfaction, against cost? We know, for instance, that M.R.I.s for patients with back pain typically leave them no healthier, but they do leave them more satisfied. Is this a cost that the American taxpayer should bear?

These types of questions are burning beneath the surface of our superficial discussions about how to improve the value of health care, but the political will to address them, from both an empirical and ethical standpoint, is decidedly absent. Indeed, Medicare is prohibited from considering cost effectiveness in coverage decisions, and, even though the Affordable Care Act does emphasize the need to fund more research comparing the efficacy of various treatments, translating these findings into practice requires a collective willingness to consider costs in coverage. Because such discussions are often conflated with rationing, any attempt to do this is a political nonstarter. Perpetuating the attribution of high health-care costs to physician greed just makes addressing these critical questions more difficult.

There is nothing wrong with trying to improve the value of health care. But better value will depend as much on doing more of what’s good as it will upon doing less of what’s bad. So much of that good isn’t captured by these numbers. You don’t bill for talking to a patient about how he wants to die. There’s no code for providing reassurance rather than ordering a test. And, for all the talk about transforming our health-care system from one that treats illness to one that promotes health, no one pays you to talk to patients about how they might lead healthier lives.

Photograph by Skynesher/Vetta/Getty.

RWJF Report: Personal Data for the Public Good

Solid report on personal health data. Interesting observation re. (lack of) alignment between research and business objectives… i.e. public vs private goods?

http://www.rwjf.org/en/research-publications/find-rwjf-research/2014/03/personal-data-for-the-public-good.html

Report: http://www.rwjf.org/content/dam/farm/reports/reports/2014/rwjf411080

PDF:

1. Executive Summary
Individuals are tracking a variety of health-related data via a growing number of wearable devices and smartphone apps. More and more data relevant to health are also being captured passively as people communicate with one another on social networks, shop, work, or do any number of activities that leave “digital footprints.”
Almost all of these forms of “personal health data” (PHD) are outside of the mainstream of traditional health care, public health or health research. Medical, behavioral, social and public health research still largely rely on traditional sources of health data such as those collected in clinical trials, sifting through electronic medical records, or conducting periodic surveys.
Self-tracking data can provide better measures of everyday behavior and lifestyle and can fill in gaps in more traditional clinical data collection, giving us a more complete picture of health. With support from the Robert Wood Johnson Foundation, the Health Data Exploration (HDE) project conducted a study to better understand the barriers to using personal health data in research from the individuals who track the data about their own personal health, the companies that market self-tracking devices, apps or services and aggregate and manage that data, and the researchers who might use the data as part of their research.
Perspectives
Through a series of interviews and surveys, we discovered strong interest in contributing and using PHD for research. It should be noted that, because our goal was to access individuals and researchers who are already generating or using digital self-tracking data, there was some bias in our survey findings—participants tended to have more education and higher household incomes than the general population. Our survey also drew slightly more white and Asian participants and more female participants than in the general population.
Individuals were very willing to share their self-tracking data for research, in particular if they knew the data would advance knowledge in the fields related to PHD such as public health, health care, computer science and social and behavioral science. Most expressed an explicit desire to have their information shared anonymously and we discovered a wide range of thoughts and concerns regarding thoughts over privacy.

Equally, researchers were generally enthusiastic about the potential for using self-tracking data in their research. Researchers see value in these kinds of data and think these data can answer important research questions. Many consider it to be of equal quality and importance to data from existing high quality clinical or public health data sources.
Companies operating in this space noted that advancing research was a worthy goal but not their primary business concern. Many companies expressed interest in research conducted outside of their company that would validate the utility of their device or application but noted the critical importance of maintaining their customer relationships. A number were open to data sharing with academics but noted the slow pace and administrative burden of working with universities as a challenge.
In addition to this considerable enthusiasm, it seems a new PHD research ecosystem may well be emerging. Forty-six percent of the researchers who participated in the study have already used self-tracking data in their research, and 23 percent of the researchers have already collaborated with application, device, or social media companies.
The Personal Health Data Research Ecosystem
A great deal of experimentation with PHD is taking place. Some individuals are experimenting with personal data stores or sharing their data directly with researchers in a small set of clinical experiments. Some researchers have secured one-off access to unique data sets for analysis. A small number of companies, primarily those with more of a health research focus, are working with others to develop data commons to regularize data sharing with the public and researchers.
SmallStepsLab serves as an intermediary between Fitbit, a data rich company, and academic researchers via a “preferred status” API held by the company. Researchers pay SmallStepsLab for this access as well as other enhancements that they might want.
These promising early examples foreshadow a much larger set of activities with the potential to transform how research is conducted in medicine, public health and the social and behavioral sciences.

Opportunities and Obstacles
There is still work to be done to enhance the potential to generate knowledge out of personal health data:

Privacy and Data Ownership: Among individuals surveyed, the dominant condition (57%) for making their PHD available for research was an assurance of privacy for their data, and over 90% of respondents said that it was important that the data be anonymous. Further, while some didn’t care who owned the data they generate, a clear majority wanted to own or at least share ownership of the data with the company that collected it.

Informed Consent: Researchers are concerned about the privacy of PHD as well as respecting the rights of those who provide it. For most of our researchers, this came down to a straightforward question of whether there is informed consent. Our research found that current methods of informed consent are challenged by the ways PHD are being used and reused in research. A variety of new approaches to informed consent are being evaluated and this area is ripe for guidance to assure optimal outcomes for all stakeholders.

Data Sharing and Access: Among individuals, there is growing interest in, as well as willingness and opportunity to, share personal health data with others. People now share these data with others with similar medical conditions in online groups like PatientsLikeMe or Crohnology, with the intention to learn as much as possible about mutual health concerns. Looking across our data, we find that individuals’ willingness to share is dependent on what data is shared, how the data will be used, who will have access to the data and when, what regulations and legal protections are in place, and the level of compensation or benefit (both personal and public).

Data Quality: Researchers highlighted concerns about the validity of PHD and lack of standardization of devices. While some of this may be addressed as the consumer health device, apps and services market matures, reaching the optimal outcome for researchers might benefit from strategic engagement of important stakeholder groups.

We are reaching a tipping point. More and more people are tracking their health, and there is a growing number of tracking apps and devices on the market with many more in development. There is overwhelming enthusiasm from individuals and researchers to use this data to better understand health. To maximize personal data for the public good, we must develop creative solutions that allow individual rights to be respected while providing access to high-quality and relevant PHD for research, that balance open science with intellectual property, and that enable productive and mutually beneficial collaborations between the private sector and the academic research community.