Pioneering Ideas

Developers Show Dedication to Improving Health Care at 2010 OSCON

Last week we travelled to Portland, Ore., to check out some of the sessions at the O’Reilly Open Source Convention (OSCON). If you aren’t intimately involved in the field of technology, you’ve probably never heard of OSCON, which is an annual event that has pretty much become a mandatory pilgrimage for those at the cutting edge of software development. So why were we there? And what does a conference geared primarily for IT professionals have to do with health care? 

To answer both questions: We are constantly searching for ideas that can lead to transformative change in health care, some of which originate from nontraditional sources. OSCON was the perfect conference to foster some of these unconventional ideas, as it included – for the first year ever – a dedicated health care track, which we also helped sponsor. Bringing together some of the most brilliant minds from the open source community to take on the biggest challenges facing health care IT just made sense. 

One of the numerous leaders in health care IT that we saw speak at the health care track included Sam Faus, who discussed how Pioneer national program Project HealthDesign’s Common Platform enabled the development of several innovative personal health applications. Other notable speakers included Google Health co-creator and chief strategest Roni Zeiger, who discussed the future of his company’s personal health record (PHR) platform, and Phillip Longman from the New America Foundation, who detailed how the VA used an electronic medical record (EMR) application suite to dramatically improve patient care while simultaneously controlling costs.  

On the other side of the podium, the reaction from the audience during Q&A sessions was a source of inspiration. Although the standing room only crowd – consisting mostly of developers and hospital CIOs –voiced some concerns over technical issues like meaningful use standards and the lack of interoperability of current EMR platforms and systems, they also echoed feelings of profound excitement to be involved in a field that has so much potential to create lasting change.  

More importantly, many of those in the audience seemed to get – and were passionate about – the concept of patient-centered care. During one Q&A, a developer asked the presenter what would happen if the PHR platform he built his mobile health application on ceased to exist in five years. To paraphrase his question, the developer asked: “Sure, I care what happens to my app if your platform goes away. But more importantly, what happens to all of the patient’s data that he’s been using my application to track? Will he just lose it?” It was reassuring to see such thought and respect given to a complete stranger’s health data from this developer, who clearly recognized the importance of his work.  

Leaving OSCON, it was evident that the developer community (both open source and enterprise) can greatly influence the way data are tracked, monitored and applied to improve the quality of care and people’s overall health. 

Conversation Continues Around OpenNotes - Let the Researchers Know What You Think

A week after the Annals of Internal Medicine published a Perspective Paper on OpenNotes, the Pioneer-supported project is continuing to generate a robust discussion online. Notably, The New York Time’s “Doctor and Patient” columnist Dr. Pauline Chen’s piece, “Should Patients Read the Doctor’s Notes,” has catalyzed a thought-provoking discussion on the Times’ Well blog.

Although there were more than 100 comments the last time we checked, most of the debate focuses on a single theme that matches the same concerns raised in the Annals paper – the patient’s “right” to access their information vs. the doctor’s “right” to determine what information is appropriate for their patients to receive. Each “side” has a variety of reasons behind their stance, from the desire to verify the accuracy of what’s included in their medical records on the patient-advocacy side of the house, to the fear voiced by numerous doctors that sharing notes will unnecessarily worry or confuse patients not well-versed in medical jargon.

While most comments are in favor of providing access – with a few adamantly opposed to the idea – there were also those who clearly grappled with both sides of the issue.

One commenter supported the concept begrudgingly, suggesting that providing access to medical records “isn’t what patients really want;” they want doctors who “make them feel heard” and access to their records is just something that will have to do for now. One doctor, who was willing to share his notes with his patients, suggested electronic medical records — with their drop down menus and limited space to tell the “story” — have made doctors’ notes less valuable to the patient.

Another doctor summed up his perspective with the comment, “Geez, this is not easy stuff.”

“The patient is your client and entitled to your thoughts and insights. But you are also a detective, and the patient is in some sense your “perp.” There are things in the medical record which patients may not understand, and things which if they understand them they make not like. But morally and legally I think you have to come down on the side of the patient’s right to know.”

These comments demonstrate just how complex of an issue the seemingly simple act of sharing visit notes really is. That is why researchers are looking to generate as much feedback as possible, as it will help them address all the pertinent questions when the study’s results are ready to be analyzed. If you haven’t weighed-in with your opinion already, there’s still time to get involved in the conversation and let the researchers know what you think by taking the Annals Physicians OpenNotes Perspective Survey.

 

The OpenNotes Conversation

As we mentioned earlier this week, one of the key aspects of the OpenNotes project, is that the conclusions will help foster an evidence-based dialogue around the concept of patient access to their physician’s notes.  It is exciting to see that Tuesday’s publication of the OpenNotes perspective paper in the Annals of Internal Medicine has people talking. The right questions are being asked, and we hope this will enable an informed and constructive conversation as OpenNotes progresses.

Want to read more on OpenNotes and join the discussion?  Check out the coverage below, share your comments here, add to the conversation by using the hashtag #opennotes on twitter and take the Annals Physicians Open Notes Perspective Survey. 

Initial OpenNotes Report: Project Description and Baseline Attitude Survey

Dave deBronkart – better known as his blogger pseudonym “e-Patient Dave” – adds his thoughts on some of the promising uses for opening up doctors’ notes.

Whose Records Are They Anyway?

Tara Parker-Pope’s coverage of the Annals article on Tuesday generated a lot of debate on the New York Times Well Blog.  She has another post today which links to Dr. Pauline Chen’s piece ‘Should Patients Read the Doctor’s Notes?’

What the Doctor is Really Thinking

The Wall Street Journal’s Laura Landro discusses both the potential of OpenNotes to move the bar for patient-centered care and some of the concerns expressed by the project’s lead researchers.

Can deciphering your doctor’s notes improve care?

Interested in what our own Stephen Downs has to say about OpenNotes? Check out his quote in Lauran Neergaard Associated Press piece.

Medical Records: Should You Read Your Own?

Robert Gleeman, author of Gleeman’s Daily News Update wonders how OpenNotes will impact EHR use in the United States.

 

 

Health Care’s Model T? How Providing Patients with Access to Their Visit Notes Can Help Transform an Industry, as Discussed in Today’s Annals of Internal Medicine

Open Notes: Allowing Patient Access to Doctors' Notes from Pioneer Portfolio on Vimeo.

Today, the Annals of Internal Medicine published a Perspective paper on OpenNotes, a Pioneer-supported demonstration and evaluation project in which more than 100 primary care physicians are inviting more than 25,000 patients to read their visit notes through secure electronic patient portals. We first covered the news of this project when it launched in June, and have been thrilled with the subsequent discussions that have been advanced since then by those at the forefront of the patient empowerment movement.

Our hope is that the concept behind OpenNotes eventually is embraced by more than just the usual set of early adopters of Health 2.0 technologies and ideas. Today’s Annals paper discusses just how transformative OpenNotes can be to every patient, not just those who are already sold on tracking their own health and health care data. And with a large, diverse pool of participants – more than 25,000 patients working with 100 primary care physicians in three states are gaining access to their medical encounter notes – we should get a solid feel for how the data is being utilized by both “e-patients” and “traditional” patients once the study is complete.  

Additionally, we hope the conclusions drawn from OpenNotes will begin an evidence-based discussion on how every patient can best exploit the “hidden core of health records” to improve the quality of their care.  As project lead Dr. Tom Delbanco so wonderfully summarizes in the Annals paper, “OpenNotes poses many questions and probably represents the Model-T stage of the future.” In other words, it is a subtle system tweak that may have the potential to revolutionize how business is conducted throughout an entire industry.

The options of how increased access to one’s own visit notes can influence care in the future are fascinating to consider. One of the more intriguing ideas advanced by Dr. Delbanco and his colleagues in the Annals paper include having both patients and their doctors sign notes jointly, indicating their agreement on the content. This could then be turned into a “quality of care contract,” complete with trackable metrics and quantifiable outcomes.  

But before we get to this point, the exact benefits of providing patient access to visit notes must be weighed against the risks. That’s exactly what OpenNotes seeks to explore – the potential concerns of both patients and primary care physicians – in order to deliver an evidence base that doesn’t currently exist. Then, only after examining this evidence base, can it be determined whether the concept can be scaled-up successfully.

What do you think about the potential providing this information has to transform health and health care? Are there any concerns that you think should be accounted for? Watch Dr. Delbanco and colleagues explain the project in his own words above, then add your thoughts by taking the Annals Physicians Open Notes Perspective Survey or leaving a comment below.

Risk Tolerance, Social Entrepreneurship, and More - Pioneer's Paul Tarini Featured in Social Velocity

Editor's Note: This post originally appeared yesterday on the blog Social Velocity.

Funding Social Innovation: An Interview with Paul Tarini

By Nell Edgington

In the July installment of the Social Velocity interview series we are talking with Paul Tarini of the Robert Wood Johnson Foundation. You can read our previous Social Velocity blog interviews with Clara Miller and Kevin Jones.

Paul Tarini is the head of the Foundation’s Pioneer Portfolio, which actively seeks innovative projects that can lead to fundamental breakthroughs in health and health care.  Because the Pioneer team is dedicated to thinking and talking about new ideas and groundbreaking approaches, including those from nontraditional sources and fields, Pioneer enables the Foundation to make conceptual leaps and take risks in grantmaking that would otherwise not be possible. Since funding is so critical to making social innovation a reality, we thought Paul would have a unique perspective on what funders can do to incentivize social innovation.

Nell: The Pioneer portfolio strikes me as a more risk-tolerant approach to giving than typical foundations are used to. Why is RWJF more comfortable with the risks inherent in this kind of portfolio of projects?

Paul: RWJF is comfortable with the higher risk, unconventional, future-facing ideas Pioneer supports because it first identified a specific niche that needed to be filled within the institutional ecology.  We call that ecology our Impact Framework.  It was conceived of at a time when RWJF was thinking hard about how we organized our work.  The Impact Framework helps us understand our grantmaking as a whole, so, not just what do the grants in a particular area add up to, but what does the whole enterprise add up to.  As we were thinking about the impact we wanted to have, we knew we needed to work in fewer, more focused teams that were/are accountable for specific outcomes.

But we realized that while focus brings power and discipline, it also can be limiting.  We wanted a way to look out beyond the work of these targeted teams.  We were thinking about how to stay relevant for the long run as a philanthropy that operates on a national scale.  We felt that in addition to the targeted work being done, we needed a place devoted to the exploration of new ideas, where we could bring in new concepts, work with different people, and support more unconventional and future-facing ideas.  Such work could help RWJF stay fresh, bring in new ideas and new grantees, continue to grow, stay ahead of the curve.  And, if we found some real winners, health and health care would benefit from the outcomes of those projects.

Out of this came Pioneer.  Here are some examples of the work we’ve supported…We funded a natural resources economist to work on the problem of antibiotic resistance (Don’t approach it as an infectious diseases problem; think about our stock of antibiotics as a natural resource that needs to be managed and develop new policy from that perspective; we’ve been funding research into whether and how digital games can be effective therapeutic interventions (Can a game that uses a breathing tube as the controller that moves characters around the screen help kids with cystic fibrosis improve their breathing therapy?); we’ve funded early work exploring whether there are specific health strengths which, if strengthened more, could serve to forestall disease and mitigate effects once disease strikes.  We’re also supporting work that builds platforms that could produce lots of new knowledge and improve care, including Kaiser Permanente’s Research Program on Genes, the Environment and Health; and, efforts to link electronic health records databases with millions of patient records in order to learn much faster about what works for patients (Rapid Learning).

Nell: I understand that the Pioneer program has a rolling unsolicited application process, but I imagine you probably need to do a good bit of on-the-ground scoping and cultivation of ideas in order to get the most promising projects into the portfolio. How do you create a deal flow for innovative projects?

Paul: This is a constant challenge for us.  We do have an open door, and we do accept unsolicited proposals at any time. But most of the proposals that come in through this door are not good fits for Pioneer. We were set up to explore unconventional and untested approaches to problems, to bring in ideas from other disciplines, to look to the future.  We were not set up to support projects that promise incremental improvements, however important those improvements may be.  We look for projects with the potential for transformative change, the kind of change that can reach beyond a single discipline or group.  Most of what comes in unsolicited doesn’t meet that standard.  Finding ideas takes work.  And because we look for ideas across the breadth of health and health care, we can’t focus on just one haystack to look for needles.  We network.  We connect with interesting people at conferences, we go to events, we take meetings and phone calls, we visit people.  We are experimenting with other ways to source ideas.  We’ve had some success with open-source competitions, though the back end, taking a winning idea and creating a fundable project, takes time.  We are putting a lot of time and energy into social media right now as another way to build networks and find ideas.  Half of me wishes there was an easier way to find ideas, but I suspect that easier would also mean more passive on our part and passive is really boring.

Nell: You currently only invest in nonprofit projects, correct? Do you see the potential for investing in for-profit or hybrid organizations, through mission-related investing, down the road, particularly as social entrepreneurship grows and for-profit solutions to healthcare issues become more prevalent?

Paul: While the majority of our investments, our funding, are in the form of grants to nonprofit organizations, there is nothing that precludes us from supporting for-profit entities.  The largest award to come out of Pioneer to date—$15.6 million—went to a for-profit, Archimedes, Inc. However, before we can make an award to a for-profit, we need to clearly establish that RWJF’s dollars are going to fund an activity with a clear charitable purpose that relates to our mission.   This is just an additional test we need to meet.  The challenge we face on Pioneer is less about whether an entity is a nonprofit, a hybrid, or a for-profit.  Our challenge is whether that entity is doing work that isn’t merely an improvement, but is doing something unconventional, disruptive and future-facing and could produce breakthroughs in health and health care.  If we’re convinced the work meets that standard, we can usually figure out how to fund it.

Nell: What is holding philanthropy back from becoming more innovative and/or risk tolerant?

Paul: People who spend more time observing philanthropies are better suited to answer this question than I am.  That said, I think it’s hard to ask this question about philanthropy as a sector.  Philanthropies have a lot of latitude; you can’t assume they are fairly similar and that we can generalize our way to an answer.  In the same way there are differences between a business that employs 200 people and one with 20,000, there are big differences between a multi-billion-dollar philanthropy and a small community foundation.  Political contexts differ, staff sophistication differs (bigger isn’t always more sophisticated), boards and donors have varying levels of influence, so I think there’s a range of reasons — philanthropy by philanthropy — for being less risk-tolerant.

If I had to pick one reason, it would be that there’s no inherent reason for a philanthropy to be innovative and highly risk-tolerant.  A lot of good can come—and has come—from philanthropies that are cautious.  As I noted above, the decision at RWJF to have a portfolio that takes on more risk came from an institutional recognition of the long-term value to us—and to the field—of such investments.  So the niche-in-the-institutional-ecology point is important here. Also, frankly, our ecology is much larger than most, and so it can be more diverse.  Other philanthropies would need to work though their own reasons to embrace more risk-taking.

Nell: The nonprofit capital market overall is fairly immature compared to the capital market of the for-profit world. Do you see other foundations creating new giving programs or financial vehicles to expand the types of capital available to nonprofits?

Paul: There is a great discussion and a lot of effort being devoted to maturing the nonprofit capital market.  More money, philanthropic and otherwise, is examining and entering this space; and, more nonprofits are thinking about what they need to do to operate in this space.  It’s very exciting and I definitely think we’ll see more of that over time.  But I also think it will be years before we see a robust capital market for nonprofits.  As much interest as there is in moving into this space, the amount of money there and the portion of nonprofits positioned to take advantage of such a capital market is still relatively small compared with traditional ways of financing and operating.

Also, I think it will take a while to understand when it makes sense for nonprofits to access capital markets and when more traditional sources of philanthropic funding are more appropriate.  Philanthropies need to understand better—given what they’re trying to achieve—when a traditional grant makes the most sense and when some other financial vehicle does.

Nell: What do you think is the potential for greater partnerships between foundations and individual investors to bring more capital to social entrepreneurs, particularly in the healthcare sector?

Paul: Good question.  For large foundations such as RWJF, I think we need to consider carefully when looking at when individual investors as funding partners makes sense.  The projects we fund, by their nature, tend to be large.  The effort involved in soliciting individual investors might not be worth the result unless we are looking at folks who have considerable wealth at their disposal.  It’s a lift when you’re trying to aggregate a bunch of $100,000 contributions to reach $5 million; fundraising is not a core competency of ours.  I do think, though, that efforts such as the Social Impact Exchange, where individual dollars would flow directly to the organizations that need them, make a lot of sense.  So I think the opportunities for individual investors to participate as true funding partners on projects with RWJF are probably limited, though we are open to them if they make sense.  But there are definitely opportunities for foundations such as RWJF to help individual investors find groups that are worthy recipients.