Author Archives: Steve Downs

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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Feeling Optimistic after SXSW

Mar 15, 2012, 3:21 AM, Posted by Steve Downs

On Tuesday I had the privilege and the pleasure of serving as a judge on the health panel at the South by Southwest Accelerator. It's a great gig, getting to hear pitches from three startup companies that had been winnowed down from a field of dozens. And the companies were terrific—each is tackling an important challenge with imaginative solutions and great technology.

First up was Simplee. Simplee is positioning itself as the of health care expenses. They've developed a service that reads through your insurance company accounts and displays your medical expenses in dashboard form—how much each family member has spent toward their annual deductible, for example.  They also explain the unexplainable—the "explanation" of benefits (EOB) statements we always get from our insurance companies, showing you what insurance covers, what you have to pay out of pocket, and why.  I'm on record (at last year’s Heath 2.0 conference) as saying that if Simplee can pull this off, co-founder Tomer Shomal should get a Nobel prize. While maybe not getting to that level of hyperbole, anyone who has regularly waded through these EOBs can relate to what I'm saying. They're starting with this basic problem of tracking and explaining expenses, but have the potential to go much further—facilitating bill payments, offering context-sensitive preventive reminders, and, as they get enough data, enabling comparison shopping for medical procedures. Best of all, you can try it today— then came on. As I've written before, I believe that the data we can capture about our day-to-day lives (observations of daily living) can greatly inform the care we receive and, as researchers start to mine it, it will become the source of new knowledge about what makes us healthy or sick. (Pioneer's Project HealthDesign has been focusing on this opportunity for the last couple of years and will soon have some research results to share.) focuses on a particular slice of this data—the data stored on our smartphones. They can capture social activity (calls, texts), geographic movement (GPS) and physical movement through accelerometers. Their twist is that they're really smart about processing the data and finding meaning in it. They're able to establish a behavioral signature and then identify any deviations from it, which can be important feedback for the user but also potentially for a clinician trying to improve a patient's health. is a spinoff from Sandy Pentland's lab at MIT (see his Pioneer- funded paper on reality mining) and by focusing on the smartphone data, they're avoiding the challenge of getting people to record anything—it's all passively collected. Currently, they're working through researchers and early adopter physicians.

The third and final presenter was Medify, which is working to bridge the gap between very high health information resources like WebMD and the medical literature. They have a robust natural language processing operation that is "reading" (crawling?) all the medical literature and coding it (i.e. intervention, disease, study population, conclusions and other attributes). The user can then get a summary along the lines of 15 studies on a total of 3,000 subjects, five of the studies showed that the intervention was safe and four showed that it was effective. You can then drill down and look at more detail and other dimensions like freshness of the research. I'm not doing it justice with this summary— you need to see it for yourself to get a feel for it. The key is that it takes the complexity of the literature on any given condition and/or treatment and starts to tame that complexity, which, as anyone who has gone Googling in search of deeper medical knowledge can attest, is a big deal. Like Simplee, you can use Medify today at

Three exciting companies—each with the potential to bring great value to important challenges in health and health care in very different ways. In the end, the winner was... Congrats to Anmol and Karan for the win, but also to the teams at Simplee and Medify for their creativity, ingenuity and terrific progress so far. These companies, along with seven other excellent candidates, are cause for optimism.

OpenNotes: Mind the Gap

Jan 4, 2012, 9:00 AM, Posted by Steve Downs

Last week, I contributed to The Health Care Blog about OpenNotes, a Pioneer grantee that is enabling patients to view the notes their doctors write after a medical visit. I wrote that it is a simple idea – but also a dangerous one.

OpenNotes recently completed a pre-survey published in the Annals of Internal Medicine that asked doctors and patients about their expectations of how the idea would play out in real life. What they found is fascinating. Doctors and patients are clearly divided. On a wide range of possible benefits, doctors are more skeptical than patients. But what really jumps out are the responses to questions of whether patients would find the notes more confusing than useful, and whether the notes would make them worry more. The gap is dramatic. In each case, most doctors said “yes” while less than one in six patients agreed.

Why this disconnect between doctors and their patients? Why the gap between what doctors believe their patients can handle, and what patients feel they are ready to see?

The post has generated a nice discussion on the blog, and in the comment responses you’ll find that the results of the survey are reflected in the dialogue. I recently added my own two cents to the conversation, and I’d love to see you post your thoughts, as well.

The survey results have also been covered by USA Today,, and TIME’s Healthland Blog.

Blue Button: Driving a Patient-Centered Revolution in Health Care

Sep 13, 2011, 7:47 AM, Posted by Steve Downs

Editor's note: This post originally appeared 9/13/2011 at the Huffington Post.

A lot can happen in a year.

Last October, I wrote about a promising new offering for people looking to take control of their own health and health care decisions. Known as "blue button," this simple (but rather revolutionary) technology offers individuals the ability to download their own health information with just the click of a mouse. They can then use and share this information however they may choose -- with doctors, care providers, or even third-party applications designed to help them track and make sense of their own personal data.

Born out of a collaborative working group convened by the Markle Foundation, the blue button was beta-tested and then implemented by the Department of Veterans Affairs, the Department of Defense, and the Centers for Medicare & Medicaid Services (CMS). The immediate demand from their patients and beneficiaries was inspiring.

Recognizing the disruptive potential of the blue button idea, we at the Robert Wood Johnson Foundation took an interest in it at an early stage of its growth. One of our aims is to help individuals understand, identify and receive high quality care. As such, exploring and supporting the development of technologies that enable people to make informed decisions is one way we hope to realize our vision of placing patients at the center of their care. Health data download capabilities modeled after the blue button approach can really move the ball forward in that regard. People can review their health records or claims information, educate themselves about conditions, procedures, medications, or test results found in their records, and share their information with family, friends and their health care providers. They can also point out errors they find and make sure that they are corrected.

I concluded my last post on the blue button idea by observing that the federal government had taken a strong step forward to give people access to their own health information, and that it was time for more in the private sector to do the same.

Not even a year later, I'm thrilled to look back and see that progress is being made -- in terms of both demand and implementation. Well over 400,000 veterans, members of the military, and Medicare beneficiaries have downloaded their data using the Department of Veterans Affairs', the Department of Defense's, and CMS' Blue Button, showing just how desired this functionality is by individuals. Equally inspiring is how much the private sector has taken up the challenge to make the health data they hold available to their patients and beneficiaries. Aetna, United Health Care, Walgreens and PatientsLikeMe are just a few of the major care providers, insurers and patient groups that have either implemented or committed to offering their consumers a blue button download capability.

Broader use of the blue button approach also offers opportunity to mobile app and software developers working in the burgeoning consumer e-health field. As the blue button download capability becomes more widespread, we expect to see more and more apps designed to take the data individuals can download and turn it into useful information and valuable tools used to manage one's health like reminders to get preventive services or refill a prescription, or a list of the lowest price outlets to order medications. To encourage these innovations, several organizations (including RWJF) have sponsored "developer challenges," and we expect more to be announced.

It's clear that we're in the middle of a health care quality revolution. But to improve outcomes on a broad scale, we need to empower individuals to become active participants in their care. Download capabilities like blue button can help do that, which is why we at RWJF are continuing to encourage their spread. Today, I am excited to announce the launch of, a web site that is a one-stop-shop for anyone (individuals, providers, insurers, health care organizations, patient groups, mobile app/software developers) who is interested in finding out how they can join the revolution.

I encourage you to help us harness the early momentum blue button has made and turn it into a full-fledged movement. Spread the word. Or better yet, visit the site and commit to transforming health care as we know it. 

Building Bridges in the City by the Bay - The 2011 Health 2.0 Conference

Aug 29, 2011, 4:13 AM, Posted by Steve Downs

We have a few questions for you.

Every day there are people who are finding new ways and developing new technologies to observe or collect information about themselves that has the power to improve health.

For example, Pioneer’s Project HealthDesign researchers are exploring practical ways for people to collect their own ODLs (observations of daily living) and integrate them into the clinical setting – empowering individuals to be at the center of their own care.

The pioneers at Open mHealth are equally committed to involving individuals in their own health and health care as they create an open learning ecosystem and share innovative technologies to improve everyone’s health.

In another cutting-edge movement, self-trackers who seek “self knowledge through numbers” are gaining insights into their own health and health-related behaviors everyday. The number of tools, apps and devices to help them are increasing exponentially, and it seems as if we’ve only scratched the surface of what people are starting to do by collecting and sharing their health-related data.

Today’s reality is that individuals have the opportunity to have the power of their own health information literally in the palms of their hands. We can point to when our blood pressure was high during the day, how our diet impacted our energy levels or sleep, what movements or behaviors caused a flare-up in back pain.

But how many will choose to track this information? Can self-tracking become mainstream in the next two years? What about five, 10 or 20 years? And if it does, then what do we do?

How do we make sure that information is put to its best use, both for us personally and the population as a whole? As patients, what do we want our doctors to do with our self-generated data? What do our doctors want us to track, and how? How do they integrate it into our diagnoses and treatment plans?

These are some of the questions we’ll be asking this coming week, September 25-28, at the 2011 Health 2.0 Conference in San Francisco. We’re excited to be a sponsor of this event and we’ve brought a diverse group of grantees and friends with us.

We’ve been involved in the broader Health 2.0 space for some time now. Through our investments in programs like Project HealthDesign, Open mHealth and support of groups like Quantified Self, we’ve been trying to bridge the worlds of technologies and health, and the experiences of patients and clinicians.

Over the course of the conference and beyond, we’ll be asking guests to help us tackle several questions that we think are critical if this movement is to reach its full potential—and we’d like your ideas too.

So tell us what you think. Help us answer these questions. Please add your comments below. You can also message us privately at

  1. What do you think are the most important challenges to be addressed in order to get more people collecting their own health data and information?
  2. What do you think are the most important hurdles to be overcome for patients to bring this information to their doctors and for it to inform clinical care? 
  3. Of all the things that one can track, what is the one piece of patient-generated data that has the most potential value to both personal health and clinical care?

As we look for opportunities to advance the thoughtful exploration of these practices, your responses will guide us. We value your input and look forward to hearing what you have to say.