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Scenarios for Health Care Reform (Part 2 of 2)

Posted on May 18, 2017 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The first part of this article suggested two scenarios that could promote health care reform. We’ll finish off the scenarios in this part of the article.

Capitalism Disrupts Health Care

In the third scenario, reform is stimulated by an intrepid data science firm that takes on health care with greater success than most of its predecessors. After assembling an impressive analytics toolkit from open source software components–thus simplifying licensing–it approaches health care providers and offers them a deal they can’t refuse: analytics demonstrated to save them money and support their growth, all delivered for free. The data science firm asks in return only that they let it use deidentified data from their patients and practices to build an enhanced service that it will offer paying customers.

Some health care providers balk at the requirement to share data, but their legal and marketing teams explain that they have been doing it for years already with companies whose motives are less commendable. Increasingly, the providers are won over. The analytics service appeals particularly to small, rural, and safety-net providers. Hammered by payment cuts and growing needs among their populations, they are on the edge of going out of business and grasp the service as their last chance to stay in the black.

Participating in the program requires the extraction of data from electronic health records, and some EHR vendors try to stand in the way in order to protect their own monopoly on the data. Some even point to clauses in their licenses that prohibit the sharing. But they get a rude message in return: so valuable are the analytics that the providers are ready to jettison the vendors in a minute. The vendors ultimately go along and even compete on the basis of their ability to connect to the analytics.

Once stability and survival are established, the providers can use the analytics for more and more sophisticated benefits. Unlike the inadequate quality measures currently in use, the analytics provide a robust framework for assessing risk, stratifying populations, and determining how much a provider should be rewarded for treating each patient. Fee-for-outcome becomes standard.

Providers make deals to sign up patients for long-term relationships. Unlike the weak Medicare ACO model, which punishes a provider for things their patients do outside their relationship, the emerging system requires a commitment from the patient to stick with a provider. However, if the patient can demonstrate that she was neglected or failed to receive standard of care, she can switch to another provider and even require the misbehaving provider to cover costs. To hold up their end of this deal, providers find it necessary to reveal their practices and prices. Physician organizations develop quality-measurement platforms such as the recent PRIME registry in family medicine. A race to the top ensues.

What If Nothing Changes?

I’ll finish this upbeat article with a fourth scenario in which we muddle along as we have for years.

The ONC and Centers for Medicare & Medicaid Services continue to swat at waste in the health care system by pushing accountable care. But their ratings penalize safety-net providers, and payments fail to correlate with costs as hoped.

Fee-for-outcome flounders, so health care costs continue to rise to intolerable levels. Already, in Massachusetts, the US state that leads in universal health coverage, 40% of the state budget goes to Medicaid, where likely federal cuts will make it impossible to keep up coverage. Many other states and countries are witnessing the same pattern of rising costs.

The same pressures ride like a tidal wave through the rest of the health care system. Private insurers continue to withdraw from markets or lose money by staying. So either explicitly or through complex and inscrutable regulatory changes, the government allows insurers to cut sick people from their rolls and raise the cost burdens on patients and their employers. As patient rolls shrink, more hospitals close. Political rancor grows as the public watches employer money go into their health insurance instead of wages, and more of their own stagnant incomes go to health care costs, and government budgets tied up in health care instead of education and other social benefits.

Chronic diseases creep through the population, mocking crippled efforts at public health. Rampant obesity among children leads to more and earlier diabetes. Dementia also rises as the population ages, and climate change scatters its effects across all demographics.

Furthermore, when patients realize the costs they must take on to ask for health care, they delay doctor visits until their symptoms are unbearable. More people become disabled or perish, with negative impacts that spread through the economy. Output decline and more families become trapped in poverty. Self-medication for pain and mental illness becomes more popular, with predictable impacts on the opiate addiction crisis. Even our security is affected: the military finds it hard to recruit find healthy soldiers, and our foreign policy depends increasingly on drone strikes that kill civilians and inflame negative attitudes toward the US.

I think that, after considering this scenario, most of us would prefer one of the previous three I laid out in this article. If health care continues to be a major political issue for the next election, experts should try to direct discussion away from the current unproductive rhetoric toward advocacy for solutions. Some who read this article will hopefully feel impelled to apply themselves to one of the positive scenarios and bring it to fruition.

Scenarios for Health Care Reform (Part 1 of 2)

Posted on May 16, 2017 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

All reformers in health care know what the field needs to do; I laid out four years ago the consensus about patient-supplied data, widespread analytics, mHealth, and transparency. Our frustration comes in when trying to crack the current hide-bound system open and create change. Recent interventions by US Republicans to repeal the Affordable Care Act, whatever their effects on costs and insurance coverage, offer no promise to affect workflows or treatment. So this article suggests three potential scenarios where reform could succeed, along with a vision of what will happen if none of them take hold.

Patients Forge Their Own Way Forward

In the first scenario, a tiny group of selfer-trackers, athletes, and empowered patients start a movement that ultimately wins over hundreds of millions of individuals.

These scattered enthusiasts, driven to overcome debilitating health problems or achieve extraordinary athletic feats, start to pursue self-tracking with fanaticism. Consumer or medical-grade devices provide them with ongoing data about their progress, and an open source platform such as HIE of One gives them a personal health record (PHR).

They also take charge of their interactions with the health care system. They find that most primary care providers aren’t interested in the data and concerns they bring, or don’t have time to process those data and concerns in the depth they need, or don’t know how to. Therefore, while preserving standard relationships with primary care providers and specialists where appropriate, the self-trackers seek out doctors and other providers to provide consultation about their personal health programs. A small number of providers recognize an opportunity here and set up practices around these consultations. The interactions look quite different from standard doctor visits. The customers, instead of just submitting themselves to examination and gathering advice, steer the conversation and set the goals.

Power relationships between doctors and customers also start to change. Although traditional patients can (and often do) walk away and effectively boycott a practice with which they’re not comfortable, the new customers use this power to set the agenda and to sort out the health care providers they find beneficial.

The turning point probably comes when someone–probabaly a research facility, because it puts customer needs above business models–invents a cheap, comfortable, and easy-to-use device that meets the basic needs for monitoring and transmitting vital signs. It may rest on the waist or some other place where it can be hidden, so that there is no stigma to wearing it constantly and no reason to reject its use on fashion grounds. A beneficent foundation invests several million dollars to make the device available to schoolchildren or some other needy population, and suddenly the community of empowered patients leaps from a miniscule pool to a mainstream phenomenon.

Researchers join the community in search of subjects for their experiments, and patients offer data to the researchers in the hope of speeding up cures. At all times, the data is under control of the subjects, who help to direct research based on their needs. Analytics start to turn up findings that inform clinical decision support.

I haven’t mentioned the collection of genetic information so far, because it requires more expensive processes, presents numerous privacy risks, and isn’t usually useful–normally it tells you that you have something like a 2% risk of getting a disease instead of the general population’s 1% risk. But where genetic testing is useful, it can definitely fit into this system.

Ultimately, the market for consultants that started out tiny becomes the dominant model for delivering health care. Specialists and hospitals are brought in only when their specific contributions are needed. The savings that result bring down insurance costs for everyone. And chronic disease goes way down as people get quick feedback on their lifestyle choices.

Government Puts Its Foot Down

After a decade of cajoling health care providers to share data and adopt a fee-for-outcome model, only to witness progress at a snail’s pace, the federal government decides to try a totally different tack in this second scenario. As part of the Precision Medicine initiative (which originally planned to sign up one million volunteers), and leveraging the ever-growing database of Medicare data, the Office of the National Coordinator sets up a consortium and runs analytics on top of its data to be shared with all legitimate researchers. The government also promises to share the benefits of the analytics with anyone in the world who adds their data to the database.

The goals of the analytics are multi-faceted, combining fraud checks, a search for cures, and everyday recommendations about improving interventions to save money and treat patients earlier in the disease cycle. The notorious 17-year gap between research findings and widespread implementation shrinks radically. Now, best practices are available to any patient who chooses to participate.

As with the personal health records in the previous scenario, the government database in this scenario creates a research platform of unprecedented size, both in the number of records and the variety of participating researchers.

To further expand the power of the analytics, the government demands exponentially greater transparency not just in medical settings but in all things that make us sick: the food we eat (reversing the rulings that protect manufacturers and restaurants from revealing what they’re putting in our bodies), the air and water that surrounds us, the effects of climate change (a major public health issue, spreading scourges such as mosquito-borne diseases and heat exhaustion), disparities in food and exercise options among neighborhoods, and more. Public awareness leads to improvements in health that lagged for decades.

In the next section of this article, I’ll present a third scenario that achieves reform from a different angle.

Three Words That Health Care Should Stop Using: Insurance, Market, and Quality (Part 2 of 2)

Posted on August 23, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The previous part of this article ripped apart the use of the words “insurance” and “market” to characterize healthcare. Not let’s turn to another concept even more fundamental to our thinking about care.

Quality

The final element of this three-card Monte is the slippery notion of quality. Health care is often compared to the airlines (when we’re not being compared to the Cheesecake Factory), an exercise guaranteed to make health care look bad. Airlines and restaurants offer relatively homogeneous experiences to all their clients and can easily determine whether their service succeeded or failed. Even at a mechanical level, the airlines have been able to quantify safety.

Endless organizations such as the National Association for Healthcare Quality (NAHQ) and the Agency for Healthcare Research and Quality (AHRQ) collect quality measures, and CMS has tried strenuously to include quality measures in Meaningful Use and the new MACRA program. We actually have not a dearth of quality measures, but a surfeit. Doctors feel overwhelmed with these measures. They are difficult to collect, and we don’t know how to combine them to create easy reports that patients can act on. There is a difference between completing a successful surgery, caring for things such as pain and infection prevention after surgery, and creating a follow-up plan that minimizes the chance of readmission. All those things (and many more) are elements of quality.

Worst of all, despite efforts to rank patients by their conditions and risk, hospitals repeatedly warn that quality measures underestimate risky patients and therefore penalize the hospitals that do the most difficult and important work–caring for the sickest. Many hospitals are throwing away donor organs instead of doing transplants, because the organs are slightly inferior and therefore might contribute to lower quality ratings–even if the patients are desperate to give them a try.

The concept of quality in health care thus needs a fresh look, and probably a different term. The first, simple thing we can do is remove patient ratings from assessments of quality. The patient knows whether the nurse smiled at her or whether she was discharged promptly, but can’t tell how good the actual treatment was after the event. One nurse has suggested that staff turnover is a better indication of hospital quality than patient satisfaction surveys. Given our fascination with airline quality, it’s worth noting that the airline industry separates safety ratings from passenger experience. The health care industry can similarly leverage patient ratings to denote clients’ satisfaction, but that’s separate from quality.

As for the safety and effectiveness of treatment, we could try a fairer rating system, such as one that explicitly balances risk and reward. Agencies would have to take the effort to understand all the elements of differences in patients that contribute to risk, and make sure they are tallied. Perhaps we could learn how to assess the success of each treatment in relation to the condition in which the patient entered the office. Even better, we could try to assess longitudinal results instead evaluating each office visit or hospital admission in isolation.

These are complex activities, but we have lots of data and powerful tools to analyze it. Together with a focus on changing behavior and environments, we should be able to make a real difference in quality–and I mean quality of life. Is there anything an ordinary member of the health professions can do till then? Well, try issuing Bronx cheers and catcalls at any meeting or conference presentation where someone uses one of the three misleading terms.

Three Words That Health Care Should Stop Using: Insurance, Market, and Quality (Part 1 of 2)

Posted on August 22, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

Reading the daily papers, I have gotten increasingly frustrated at the misunderstandings that journalists and the public bring to the debates of over health expansion, costs, and reform. But you can’t blame them–our own industry has created the confusion by misusing terms and concepts that work in other places but not in health. Worse still, the health care industry has let policy-makers embed the incorrect impressions into laws and regulations.

So in this article I’ll promote the long process of correcting the public’s impressions of health care–by purging three dangerous words from health care vocabulary.

Insurance

The health care insurance industry looks like no other insurance industry in the world. When we think of insurance, we think of paying semi-annually into a fund we hope we never need to use. But perhaps every twenty years or so, we suffer damage to our car, our house, or our business, and the insurance kicks in. That may have been true for health care 70 years ago, when you wouldn’t see the doctor unless you fell into a pit or came down with some illness they likely couldn’t cure anyway. The insurance model is totally unsuited for health care today.

The Affordable Care Act made some symbolic gestures toward a recognition that modern health care should embrace prevention and wellness. For instance, it eliminated copays for preventative visits. The insurance companies took that wording very literally: if you dare to bring up an actual medical problem during your preventative visit, they charge you a copay. Yet the “preventative” part of the visit usually consists of a lecture to stop smoking and go on the Mediterranean diet.

Effective wellness programs jettison the notion of insurance (although patients need separate insurance for catastrophic problems). They keep in regular contact with clients, provide coaching, and sometimes use intelligent digital interventions such as described by Dr. Joseph Kvedar in The Internet of Healthy Things (which I reviewed shortly after its release). There are scattered indications that these programs do their job. As they spread, the system set up to deal with catastrophic health events will have to adapt and take a modest role within a behavioral health model.

The term “insurance” is so widely applied to our healh funding model that we can’t make it go away. Perhaps we should put the word in quotation marks wherever it must be used.

Market

This term is less ubiquitous than “insurance” but may be even more harmful. Numerous commenters have pointed out the difference between health care and actual markets:

  • In a market, you can walk away and refuse to pay for a good that is too expensive. If the price of beef goes through the roof, you can switch to beans (and probably should, for your own health). So the best time to argue with someone who promotes a health care market may be right after he’s fallen from a ladder and is clutching at his leg in agony. Ask him, “Do you feel you can walk away from an offer of health care?” Cruel, but a lesson he won’t forget.

  • A market serves people who can afford it. It’s hard to find a stylish hair dresser in a poor neighborhood because no one can pay $200 for a cut. But here’s the rub: the people who need health care the most can’t afford it. Someone with serious mental or physical problems is less likely to find work or be able to attend a college with health insurance. Parents of seriously ill children have to take time off from work to care for them. And so on. It’s what economists–who have trouble discarding the market way of thinking–call a market failure.

  • In a market, you know what you’re going to pay for a service and what your options are. Enough said.

  • In a market, you can evaluate the quality of a service and judge (at least in retrospect) whether it was worth the cost. I’ll deal with quality in the next section.

The misconception of health care as a market came to a head in the implementation of the Affordable Care Act. Presumably, millions of “young invincibles” were avoiding health insurance because of the cost. The individual mandate, combined with affordable plans on health care exchanges, would bring them flooding into the insurance system, lowering costs for everyone and balancing the burden created by the many sick people who we knew would join. And yet now we have stubbornly rising health care rates, deductibles, and caps, along with new costs in the states where Medicaid expanded Where did this all fall apart?

Part of the problem is certainly the recession, which caused incomes to decline or stagnate and exacerbated people’s health care needs. Also, there was a pent-up need for treatment among people who had lacked health insurance and avoided treatment for some time. This comes through in a study of prescription medication use. Furthermore, people don’t change habits overnight: many continue to over-rely on the emergency room (perhaps because of a shortage of primary care providers).

But there’s another unanticipated factor: the “young invincibles” actually start using health care once they get access to it. An analysis showed that mental health needs among the young are much higher than expected. In particular, they suffer widely from depression and anxiety, which is entirely reasonable given the state of our world. (I know that these conditions are connected to genetics and biology, but environment must also play a role.)

Ultimately, until we get behavioral health in place for everybody, health care costs will continue to rise and we won’t realize the promise of near-universal coverage. Many health care activists–especially during the recent political primary season–call for a single-payer system, which certainly would introduce many efficiencies. But it doesn’t solve the problems of chronic conditions and unhealthy lifestyles–that will require policy action on levels ranging from improvements in air cleanliness to new opportunities for isolated individuals to socialize. Meanwhile, we still have to look at the notion of quality in tomorrow’s post.