Author Archives: Steve Downs

Moving Forward with OpenNotes

Aug 14, 2013, 8:00 AM, Posted by Steve Downs

As Beth Israel Deaconess Medical Center (BIDMC) begins its institutional rollout of OpenNotes, it's becoming clear that we've moved into a new phase of the diffusion of this innovation. I've been in discussions with OpenNotes co-directors Tom Delbanco, MD and Jan Walker, RN, MBA about the idea of opening up physician notes to patients since 2008, when it was a bold, controversial idea that needed to be tested. The landmark study that Tom, Jan and their colleagues conducted over 2011-2012 and published last fall made it quite clear that the idea had merit: overwhelming percentages of patients found it helped them better understand their conditions, feel in more control of their health and even take their medicines more regularly. 99 percent of patients in the study wanted to continue with the practice. As for physicians, their fears went largely unrealized. It simply wasn't a big deal.

Recently we've seen more leading institutions climb on board with the practice of sharing medical notes: the VA is adopting OpenNotes, as is Group Health Cooperative; Geisinger, one of the original study sites, is expanding the practice throughout much of its system; the Cleveland Clinic announced its intention to share visit notes; and you can now read your doctor's notes at the Mayo Clinic. More will undoubtedly follow in the months and years ahead. As we move into the implementation phase at these and other institutions, the questions will shift from whether the idea is good to more practical inquiries around how well it fits certain specialties (like psychiatry) or departments; whether there are patterns in the types of patients (or physicians) that flourish under this approach; and how to manage the cultural changes that OpenNotes implies.

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The Body-Data Craze, the Hype Cycle and Why It Matters

Jul 3, 2013, 11:15 AM, Posted by Steve Downs

On my way out to visit the Calit2 team that is running the Health Data Exploration project (sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio), I read Alissa Quart's excellent piece in Newsweek about the Quantified Self (QS) movement and health. The article covers many of the possible benefits as well as the downsides of self-tracking.

As Quart acknowledges, she also focuses quite a bit on the edge cases, the extreme QSers, painting a picture that can seem a little ridiculous. It’s inevitable; whenever a new technology emerges, a subset of early adopters takes it to the extreme, making the technology and its applications easy for us to mock (see "glasshole").

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Video: Larry Smarr on the Health Data Exploration Project

Jun 10, 2013, 8:00 AM, Posted by Lori Melichar, Steve Downs

As we set forth on the Health Data Exploration project, we're being guided by a wonderful set of advisors. Here's a quick video post from one of them, Larry Smarr, the director of Calit2.  Larry's a pioneer who's exploring the frontiers of quantified self, as you can see from the extraordinary talk he gave at TEDMED earlier this year.

This commentary originally appeared on the RWJF Pioneering Ideas blog.

Health Data: Let's Go Exploring

May 29, 2013, 8:00 AM, Posted by Lori Melichar, Steve Downs

Think about it for a moment. When you consider what you "know" about health, where does that knowledge come from? While we all have our sources—doctors, friends, news articles—our knowledge at its core is derived from research. And that research is built on a foundation of data.

Data about health typically come from several types of sources: clinical data, gleaned from electronic health records or chart pulls, and billing and claims data, which are byproducts of the health care process; and public health surveillance data, which are specialized collections about particular topics or populations. All of these sources can then be supplemented, at a considerable cost, by original data collection efforts specific to a particular study.

These different types of data are like pieces of a jigsaw puzzle; when assembled, they create a more complete picture of health.

But a piece of the puzzle is missing.  Or it has been up till now.

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Bringing OpenNotes to Geisinger

May 20, 2013, 12:59 PM, Posted by Steve Downs

In a post this week on the Kevin MD blog, Jon Darer, chief innovation officer for the Division of Clinical Innovation at Geisinger Health System, discussed Geisinger's decision to roll out OpenNotes to most of its physicians and patients.

Geisinger's approach highlights the choices that will be facing many health systems: The results of the OpenNotes study, published last fall, provide compelling evidence to go forward in general, but there is a need to be careful and thoughtful about how to do so. Different specialties and different patient populations have special circumstances that need careful consideration. And each institution has its own culture to be navigated. As more early adopters like Geisinger move forward, we'll learn more about how best to implement this practice and through that learning, make it more widely available. — Steve Downs

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When Moneyball Meets Medicaid

May 16, 2013, 8:00 AM, Posted by Steve Downs

New York State Commissioner of Health Nirav Shah is the Billy Beane of health care.

Let me explain. 

Billy Beane—the general manager and minority owner of the Oakland Athletics—and made famous in the book Moneyball: The Art of Winning an Unfair Game by Michael Lewis, was made even more famous when Brad Pitt portrayed him in the movie adaptation. (Generally speaking, having Brad Pitt portray you is a good way to get famous.)

For those who aren’t familiar, Moneyball is about how, under Beane’s unconventional leadership, “the Oakland Athletics achieved an amazing winning streak while having the smallest player payroll in Major League Baseball. (Short answer: creative use of data.)” (Thank you, New York Times.)

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OpenNotes: The Results Are In

Oct 3, 2012, 6:00 PM, Posted by Steve Downs

Steve Downs Steve Downs

Originally posted on The Health Care Blog.

A few years ago, Tom Delbanco and Jan Walker pitched us with a simple idea: Patients should routinely be able to see the notes that physicians write about them.  Now it’s true that we all have the legal right to see these notes, but obtaining them is anything but routine. The process involves phone calls, faxes (sic), duplicating fees and all sorts of other demoralizing steps. The net result is that reviewing your doctor’s notes about you is a rare experience.

Tom and Jan said that the physicians with whom they had spoken about this idea were split. Some were interested, some were resigned: They recognized that transparency was an increasingly powerful wave and that the world seemed to be heading this way, and the others thought they were crazy—notes were for documentation and communication among doctors and were never intended for patients.  The arguments were of a religious quality—they were about belief and values.  The obvious solution was to test the idea and let data help sort it out.  Today, with the publication of the study results in the Annals of Internal Medicine, that debate is now illuminated.

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Focus on the Pig: The Making It Better Symposium at RISD

Mar 16, 2011, 10:21 AM, Posted by Steve Downs

Aidan Petrie of Ximedica said it bluntly. In acknowledging that it is often tough for designers to break into health care institutions and play a significant role, Petrie, an industrial designer, gives this advice to designers: "remember, it’s not about putting lipstick on a pig – it’s about the pig." Exactly. In that stark phrase Petrie captured much of my thinking as I sat through the day-and-a-half long “symposium on art, design and the future of health care” at the Rhode Island School of Design (RISD), sponsored by RWJF’s Pioneer Portfolio. The intersection of art, design and health should not be about prettying up a lousy system—it should be about designing a better system to begin with.

The symposium was the brainchild of RISD president John Maeda, who wanted to connect the talents of RISD students and faculty with the urgent problems of health and health care. And there were many references to the strange bedfellows nature of the gathering. This awkwardness was most pronounced among the participants who came from the health care and public health side of the aisle. The artists and designers who spoke generally seemed quite comfortable with the notion that health does not exist independent of a broader life but is deeply intertwined, and as such, it is a natural subject for art and design.

So we saw Damon Rich apply a designer’s approach to understanding how to boost public participation in the decision-making processes that affect public spaces; the wonderful artist Mel Chin bring his passion and vision to the tragedy of lead poisoning in inner cities; and Amale Andraos’ brilliant visions of greener, healthier urban landscapes and buildings. But, by and large (there were exceptions), participants from the health sector looked at this question of how art and design could intersect with health with a slight puzzlement before defaulting to... communication. As one put it, we need great designers to help us communicate the complexity of health care in ways that people will understand. With all due respect to health communication, which is a vital field, health in the United States has even more fundamental challenges that demand the talents and skills of the design and artistic communities. Let’s get them to focus on the pig.

Within a couple of generations we have managed to engineer movement out of our work days, cooking out of our homes and play out of our children’s lives. We have designed communities and pioneered lifestyles whose only logical consequence is poor health. We have designed a health care system that has brought us the 7-minute office visit, the dreaded emergency room wait, the explanation of benefits statement, 50 million people without coverage and – oh yeah – a crushing federal deficit. I won’t be naïve and say that a few designers will turn this all around – these are deep-rooted problems – but I do believe strongly that we need the creativity and the perspective that they bring. We need people who look at these problems differently. Who are, as John Maeda put it, naturally curious. Whose views are not so deeply ingrained that they cannot ask “why not?” Who, like the delightfully unexpected Kelly Dobson, ask questions that stop us in our tracks, make us uncomfortable and make us remember that we’re human.

This commentary originally appeared on the RWJF Pioneering Ideas blog.

Why I Want a Blue Button

Oct 19, 2010, 12:56 PM, Posted by Steve Downs

This article appeared originally in the Huffington Post on 10/19/2010.

This morning my colleague, Dr. Carol Diamond of the Markle Foundation, appeared on the Today Show to talk about an initiative called “blue button.” 

As many have experienced, getting a copy of your medical records is rarely as simple as it sounds.  The process often involves making multiple phone calls, having to fax in requests, paying photocopying charges and waiting – often as much as a few weeks.  And at the end of the process all you have is a stack of paper – good for reading and for filing away, but not much else.  But today, as more and more hospitals, pharmacies, and physician offices are adopting electronic medical records, the process should get better.  Health care institutions in the vanguard of information technology and customer service are making it possible for their patients to review their records online.  But not necessarily take them with them.  That’s where the blue button idea comes in.  It’s a simple practice: when a patient logs in to her account, provide a highly visible, clickable button to download her records in digital form.  As Dr. Diamond noted, the federal government has taken a leadership role in modeling this practice.  The Department of Veterans Affairs started providing blue button downloads to all patients of the VA system back in August and the Center for Medicare and Medicaid Services has launched a similar blue button service for all Medicare beneficiaries.  And their efforts have not gone unnoticed – more than 60,000 veterans have downloaded their medical data since the launch.  The Markle Foundation has also worked with experts from consumer and patient groups, health care provider, privacy advocates and technology companies to develop a set of recommended blue button practices that ensure high levels of security and privacy. 

So why does it matter?  For starters, reviewing your medical records is a step towards better engagement in your health.  You can learn more about your conditions, your lab results and the treatments you might be undergoing.  You can use the records as a springboard to conversations with your doctor.  But you can do that paper records.  Why does digital matter?  Two reasons: sharing and apps.  Of course, when you get your paper records, you can always photocopy them and send them on to someone you’d like to review them.  But we all know that it’s so much easier to share digital information online.  So when you want your uncle the doctor to help you interpret a result, or when you and your sibling want to discuss Dad’s condition, it’s easily done. 

But the real power lies in the apps.  We now live in a world where there really is an app for just about everything.  There are 6,000 apps for the iPhone that focus on health and fitness.  They help  with day-to-day health-related tasks, like managing your diet, tracking your exercise, understanding your meds, or checking out your symptoms.  But these apps are, by and large, ignorant of the details of your health that could make them smarter and offer you more value.  Many of them, and many that will soon be invented, could be even better if they could draw upon the information contained in your medical records – to spot trends in your lab values and warn you when a trend is of concern; to correlate your moodiness with a new medication you’re taking; or to remind you it’s time order that prescription refill, to name a few.  And we’ve already seen that the data made available through blue button downloads will lead to new apps.  Earlier this month, the Markle Foundation and the Robert Wood Johnson Foundation announced the results of the blue button Challenge, held as part of the Health 2.0 Developer Challenge.  With only a modest prize, the challenge drew nine entries, including the winner, from Adobe Systems, which was a slick front-end for the VA’s data, making it easy for people to read, share and discuss the information.  It also included a set of tools and reminders related to medications.  Another significant entry came from Microsoft, which built a way for blue button downloads to go straight into its HealthVault personal health record service, which provides access to more than 50 different apps.  And this all happened over the course of a month.  As blue button becomes much more widespread, we can expect to see more and more apps designed to take the data you can download and turn it into useful information and valuable tools you can use to manage your health.

The federal government has taken a strong step forward to give people access to their medical records.  Now it’s time for more in the private sector to do the same.  I know I want a blue button on my doctor’s Website.  If you think this is a good idea – if you believe that people should be able to download their medical records, or if you would like your physician’s office to make yours available, or if you have a totally different take on this question, please join the conversation on Twitter – send a tweet with your opinion and be sure to use the hashtag #bluebutton.

This commentary originally appeared on the RWJF Pioneering Ideas blog.

Benchmarking Progress in Health IT

Feb 17, 2010, 4:08 AM, Posted by Steve Downs

Being at TED last week led to some interesting conversations about data, health and the progress of health IT.  One conversation in particular stuck with me – a computer industry executive pointed out that the pace of innovation in the computer industry is orders of magnitude faster than in the health IT industry.  Orders of magnitude.  As in 10, 100, 1000 times faster.  A bold claim.  But then think about some of the advancements shown at TED:

- Microsoft’s integration of Photosynth and Sea Dragon technologies to create a Virtual Earth experience where you can now do a street level fly through of a city neighborhood and see the facades of the buildings around you.  And where there are web cams, seamlessly integrate live video into the view.

- A voyage through the Digital Universe, which is about what it sounds like – extending the Virtual Earth/Google Earth experience to all known objects in the universe.

- Google’s demo of an image recognition feature where the presenter took a photo of a postcard of a hotel with the Nexus One and Google (the omniscient Google – not the company) returned the name and address of the hotel.  And speech-to-speech translation through the Nexus One as well.

- John Underkoffler’s prototype interface in which people can gesture toward a screen to “pick up” a document, then walk across the room and drop the document onto the screen of a different computer.

 

When you step back and think about it, it’s truly extraordinary.  The gap between sci-fi and ship dates is closing rapidly.  Magic abounds.

So where are we with health IT?  Progress to be sure.  Pockets of excellence.  But as best as I can tell, we’re still struggling with threshold challenges around data exchange, interface design, workflow and deployment at scale.  I’m still processing all this and I’m probably missing something, so I’d really like to hear from people on this question – is the pace of innovation in health IT really that much slower than in the computer and software industries?  If so, then the implications for how we think about the integration of IT into health care are really serious.

This commentary originally appeared on the RWJF Pioneering Ideas blog.