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Advancing Health Equity in the Digital Age

Karen DeSalvoDuring National Minority Health Month, we acknowledge the potential for health information technology (health IT) – from electronic and personal health records to online communities to mobile applications – to transform health care and improve the health of racial and ethnic minorities.

Lack of access to quality, preventive health care, cultural and linguistic barriers, and limited patient-provider communication are factors that aggravate health disparities.

By increasing our investment in health IT policies and standards, we can help improve the quality of health care delivery and make it easier for patients and providers to communicate with each other – a huge step toward addressing the persistence of health disparities.

The Pew Research Center’s Internet & American Life Project External Links Disclaimer found in 2012  that African Americans and Latinos are more likely to own a mobile phone than whites and outpace whites in mobile app use, using their phones for a wider range of activities.

The study showed that African Americans and Latinos use their mobile phones more often to look for health information online. This has very important implications for personal management of health and interaction with the health care system.

However, barriers to widespread adoption of health IT remain.

For example, a 2014 consumer engagement report found that minorities were less likely to adopt online patient portals to access their health information than were non-Hispanic whites.

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Health Information Technology: Sorry, There’s No Turning Back!

flying cadeuciiThe American Recovery and Reinvestment Act of 2009 (ARRA), sometimes called the Stimulus Actwas an $831 billion economic stimulus package enacted by the 111th Congress in February 2009 and signed into law on February 17, 2009 by the President.

It included $22 billion as incentives to encourage adoption of certified electronic medical records in hospitals and medical practices. The rationale behind the policy directive was clear: system-wide implementation of electronic medical records enables improvement in diagnostics and treatment coordination, fewer errors, and better coordination of patient care by teams of providers.

Almost immediately, the medical community cried foul.

Their primary beef: the cost to implement these new systems would not be recovered by the incentives.

Similarly, physicians pushed back on the conversion of the U.S. coding system from ICD-9 to ICD-10. They did not question the need for the upgrade: the increase from 19,000 to 68,000 codes is necessary to more accurately capture all relevant clinical aspects of a patient’s condition and align our data gathering with 20 other developed systems of the world where ICD-10 is already used.

That health insurers, medical groups, hospitals and others must use the same coding system that reflects advances in how we diagnose and treat seems a no brainer. But some physicians pushed back due to costs and disruption in their practices.

Last week, physicians won a battle: the Centers for Medicaid and Medicare Services (CMS) announced it was delaying the deadline for implementation of ICD-10 for a year, to October 1, 2015.

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A New Way to Explore and Comment on Doctor Data

Screen Shot 2014-04-18 at 1.39.05 PM

The American Medical Association (AMA) says the number one issue with recent data releases from HHS is that “there is currently no mechanism for physicians and other providers to review and correct their information.”

We think we have a way to fix that problem over at the DocGraph project!

Over the last two years there have been three major breakthroughs in the analysis of doctors using Open Data. The first was the original teaming and referral database obtained by DocGraph (us) under a FOIA request. The second was the prescribing data set obtained by ProPublica. Both DocGraph and Propublica worked around the 1978 injunction limiting the use of FOIA for doctor data.

The third is the new procedure pattern data set announced as the direct result of the overturning of the 1978 injunction.

We are happy to announce the release of the first “all-in-one” open doctor data browser that we are calling DocGraph Omni. We have created a public tool that allows you to browse the merger of all three major new open data sets about doctors and other healthcare providers that bill Medicare.

Now in one place you can view how a provider prescribes, how they collaborate, and which procedures they work with. Our intention to turn Omni into a browser where you can find any open data about doctors, no matter what the source.

But this is not just about “finding” the data. We have created a system that allows anyone to comment on any given data point in these data sets.

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Things That Make Me Worry About My Colonoscopy

The Pentax Colonoscope. Source: University of Illinois Wiki

Sorry to get all Katie Couric on you, but I’m going to have a colonoscopy on Friday. I turned 40 last October and I have some family history that leads my doctor to get one done now rather than at 50.

Unlike Katie, I won’t be broadcasting mine live, but I’ll share some articles and reflections on the process and, being process focused, what could go wrong. It’s a very necessary procedure, but there are, sadly, some very unnecessary and preventable risks.

According to  Dr. Wikipedia (backed by journals):

This procedure has a low (0.35%) risk of serious complications

That’s about 1 in 300 patients, put another way.

For those of you who speak Six Sigma, that’s a 99.65% first time yield and a 4.2 sigma level.

That’s not going to scare me away.

Maybe I should have asked what my physician’s complication rates are. What are the complication rates at the surgical center where this will be done? Is this safer than being at a full-blown hospital or doesn’t it matter? Should I be more of an “engaged patient?”

Should I have asked more questions of my primary care provider? Why did she refer me to this GI specialist? Is he a “Best” doctor? Does that matter?

If I treat them as a supplier (respectfully), should I be able to walk the process and see what they do to prevent, say, instrument or scope disinfection errors?

Should I have asked:

  • Show me how you disinfect the equipment
  • Show me your training records for the people doing this work
  • Show me your equipment maintenance records
  • How do you verify that the work is being done properly?
  • Have you had any complaints or incidents in the past?

I had my pre-procedure phone call on Monday. Maybe I should follow up and ask a few of these questions, even if I can’t go “walk the gemba” to check things out myself. What would you do?

Of course, I didn’t have data or information available to me to know:

  • Which specialist is best at this?
  • Who has the highest or lowest complication rates?
  • What are the prices for different doctors or locations?

I don’t know how a busy person makes an informed decision.

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Whose Cancer Is It, Anyway?

flying cadeuciiI recently read a blog by Dr. Danielle Ofri in the New York Times “Well” blog about how as a physician she learned to respect the patient’s wishes even when they contradict her professional inclinations. It’s called Doctor Priorities vs Patient Priorities.”

She writes that the patient is looking through a “wide-angle lens” that takes in the whole of his life while the doctor’s lens is “narrowly focused on the disease that pose[s] the gravest and most immediate risk”. She saw her challenge as entering into dialogue with her patient in order better to understand the wider perspective of his whole life and to work with him to find the most acceptable way to deal with his disease.

If only Dr. Ofri were an oncologist. If only she were my oncologist. My last appointment with my onco, Dr. G, was a disaster. Not only have I not been back to her, I have not gone to any oncologist since then. Part of that is because I don’t want any treatment at this time; that’s still true.

But if I am going to be very honest, and I try to be that always, it is also because of that disastrous appointment with Dr. G.

First of all, she would not respect my decision not to have any more chemo and refused to order any scans unless I would a priori agree to chemo if she decided it was indicated. She also mocked me. It took a long time for me to tell that second bit. In fact, from that day in August 2013 until just recently—seven months!—I only told one or two other people about what happened.

The evening of that last appointment, Dr. G called me at home to continue the argument. I found myself apologizing for causing her distress. Yes, I know that’s ridiculous, but that is how I react to being bullied. Borrowing the words of a friend who really gets it, I apologize to others for their hurtful behavior and then I internalize it. I haven’t talked about Dr. G mocking me because I feel ashamed.

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What I Would Do If My Foot Caught Fire

flying cadeuciiI know it seems like the obvious choice, but I would not run a randomized clinical trial.

I have recently lamented the pernicious influence, within my domain of public health practice, of hyperbolic headlines proclaiming “this,” followed unfailingly by equally and oppositely hyperbolic headlines reactively proclaiming “that.”

But we are obligated to acknowledge that there are, generally, research studies underlying the headlines, however extreme the pop culture distortions of the actual findings. So to some extent, the problem originates before ever the headlines are a gleam in an editor’s eye, with our expectant anticipation of the next clinical trial, and the next, and the next.

By all means, bring on the clinical trials! They serve us well. They advance the human condition. I run a clinical research lab — my career is devoted to just such trials.

But still, I wouldn’t conduct one if my foot caught fire.

Of course, there is a very good case for running such a study, as many vitally important questions about the right response to a foot on fire are at present unanswered. What, for instance, would be the ideal volume of water? Should it be hard water, or soft? Fluoridated, or not? A controlled trial is very tempting to address each of these.

The vessel is even more vexing. What would be the best kind of bucket? What size should it be? What color should the bucket be, what composition, and what’s the ideal kind of handle? I think the variations here are the basis for an entire research career.

Perhaps the notion of running randomized, double-blind, controlled intervention trials to determine the right response to a foot on fire seems silly to you. But if so, you must be suggesting that science does not preclude sense.

That’s rather radical thinking in some quarters.

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Rebooting Primary Care From the Bottom Up

Zubin DamaniaFor the better part of a decade, I practiced inpatient hospital medicine at a large academic center (the name isn’t important, but it rhymes with Afghanistan…ford).

I used to play a game with the med students and housestaff: let’s estimate how many of our inpatients actually didn’t need hospitalization, had they simply received effective outpatient preventative care. Over the years, our totals were almost never less than 50%.

For my fellow math-challenged Americans: that’s ONE HALF! Clearly, if there were actually were any incentives to prevent disease, they sure as heck weren’t working.

In a country whose care pyramid is upside down—more specialists than primary care docs, really?—we’re squandering our physical, emotional, and economic health while spending more per capita than anyone else. Four percent of our healthcare dollars go towards primary care, with much of the remaining 95% paying for the failure of primary care. (The missing 1%? Doritos.)

Worse still, the oppressive weight of our non-system’s dysfunction falls disproportionately on the shoulders of our primary care providers—the very instruments of our potential salvation. To them, there’s little solace (and plenty of administrative intrusion) in the top-down reform efforts of accountable care organizations and “certified” patient-centered medical homes.

But what about a bottom-up, more organic effort to reboot healthcare? A focus on restoring the primacy of human relationships to medicine, empowering patients and providers alike to become potent, positive levers on a 2.8 trillion dollar economy? What if we could spend twice as much on effective, preventative primary care and still pull off a net savings in overall costs, improvements in quality, and increased patient satisfaction?

What if George Lucas had just quit after the original Star Wars series? Wouldn’t the world have been better without Jar Jar Binks?

While the latter question is truly speculative, the former ones aren’t. We’re trying to answer them in Las Vegas (hey now, I’m being serious) at Turntable Health, where we’ve partnered with Dr. Rushika Fernandopulle and Cambridge, MA based Iora Health.

We aim to get primary care right by doing the following:

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Virginia Should Take Obamacare’s Money

flying cadeuciiIn September 2012, I said that Republican governors should be expanding their Medicaid programs under Obamacare.

I argued that Republicans have long called for state block grants and the flexibility to run their own Medicaid programs in what are the state “laboratories of democracy.”

I made the point that, given the then recent Supreme Court decision enabling states to opt out of the expansion, the Obama administration would be hard pressed to deny any reasonable proposal from Republican governors.

If Republicans really believed in state responsibility and flexibility for how they run their Medicaid programs, this was the opportunity to prove it. (See here.)

Since then, a few Republican governors have taken that tack and the Obama administration has been very cooperative and flexible.

This is a good place to recognize outgoing HHS Secretary Sebelius for her leadership by being willing to work with state Republicans in order to get millions of people covered who wouldn’t be getting coverage otherwise.

Good faith Republican Medicaid proposals have led to good faith responses from Sebelius’ Department of Health and Human Services (HHS) and a few done deals and other deals still in the works.

Many Republicans have said that Medicaid is not sustainable and that the feds could well cut the new Obamacare funding in future years. Sebelius responded by giving these governors an out if funding were to be cut.

Of course Medicaid is unsustainable, that’s why the states should be given the autonomy to run their own plans and deal with these challenges in any number of different ways the country can learn from.

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What a Physician-Led ACO Can Teach Us about Getting It Right

Farzad MostashariSeveral of the provisions included within the Affordable Care Act in 2011 designate Accountable Care Organizations (ACOs) as formal, contractual entities.

However, in the real world ACOs come in a variety of shapes and sizes.

When compared to larger, hospital-sponsored ACOs, rural and small physician-led ACOs face a tough challenge, because despite limited resources they need to come up with substantial upfront capital and infrastructure investment to establish a strong ACO foundation.

To help ease this burden, 35 ACOs were selected to participate in the Advanced Payment Model ACO demonstration through a grant program from the Center for Medicare and Medicaid Innovation (CMMI). The grants provided a portion of upfront capital to determine whether or not this financial assistance would help ease the startup burden for smaller ACOs, and increase their success rate.

One of those 35 organizations includes the central Florida-based Physicians Collaborative Trust ACO, LLC (PCT-ACO). They are participants in the January 2013 Medicare Shared Savings Program (MSSP) ACO cohort, along with 106 other ACOs.

Larry Jones, PCT-ACO’s CEO, describes his personal mission as an effort to “preserve and protect the independent practice of medicine.” For over 25 years he has been advocating for physicians through their efforts to organize, negotiate with health plans, and other challenges.

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Health IT: The Coming Regulation

flying cadeuciiThe Food and Drug Administration has spent decades refining its processes for approving drugs and devices (and is still refining them), so what would happen if they extended their scope to the exploding health software industry?

The FDA, and its parent organization, the Department of Health and Human Services, are facing an unpleasant and politically difficult choice.

Sticking regulatory fences into the fertile plains of software development and low-cost devices will arouse its untamed denizens, who are already lobbying Congress to warn the FDA about overreaching. But to abandon the field is to leave patients and regular consumers unprotected. This is the context in which the Food and Drug Administration, the Office of National Coordinator, after consultation with outside stakeholders, released a recent report on Health IT.

I myself was encouraged by the report. It brings together a number of initiatives that have received little attention and, just by publicizing the issues, places us one step closer to a quality program. Particular aspects that pleased me are:

  • The suggestion that quality programs should start to look at electronic health records (p. 8). EHRs have been certified by various bodies, but usually just to check off boxes and declare that the systems comply with regulations–neither the quality of their user interfaces nor the quality of their implementations have been questioned. Reportedly, the FDA considered “safety and quality standards” for electronic health records in 2010 but couldn’t get them adopted. It also checks certain forms of clinical decision support, but only if they are built into a regulated device. The current HHS report refers back to aspirational documents such as a Health Information Technology Patient Safety Action & Surveillance Plan and a set of guidelines on the safety of EHRs.
  • A call for transparent reporting and sharing of errors, including the removal of “disincentives to transparent reporting”–i.e., legal threats by vendors (p. 25). Error reporting is clearly a part of the “environment of learning and continual improvement” I mentioned earlier. A regulation subgroup stated the need most starkly: “It is essential to improve adverse events reporting, and to enable timely and broader public access to safety and performance data.” Vague talk of a Health IT Safety Center (p. 4, pp. 14-15) unfortunately seems to stop with education, lacking enforcement. I distinctly disagree with the assessment of two commentators who compared the Health IT Safety Center to the National Transportation Safety Board and assigned it some potential power. However, I will ask ONC and FDA for clarification.
  • A recognition that software is part of a larger workflow and social system, that designing it to meet people’s needs is important, and that all stakeholders should have both a say in software development and a responsibility to use it properly.

Don’t imagine that the FDA is unused to regulating software. For quite some time they have instituted practices for the software used in some medical devices , and have tried to keep them up-to-date.

A waterfall-like process of risk assessment and testing called computer system validation has long been required for pharma and devices.

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