Pioneering Ideas

Q&A with Freelancers Union’s Sara Horowitz on Modernizing Health Insurance

The Centers for Medicare & Medicaid Services last month awarded $340 million in low-interest and no-interest federal loans to three organizations sponsored by Freelancers Union, a Pioneer Portfolio grantee, to create three of the first seven Consumer Operated and Oriented Plans (CO-OPs) in New York, New Jersey and Oregon. Created by the Affordable Care Act, CO-OPs are consumer-governed health plans that use profits to lower costs for consumers, improve quality of health care, and increase enrollment or benefits based on members’ needs.

We caught up with Sara Horowitz, the founder and executive director of Freelancers Union, to gain some insight on lessons she’s learned, what it means to be truly innovative, and how to put the “health” back in health insurance. The nonprofit Freelancers Union, with 171,000 members nationwide, advocates on behalf of the 42 million independent workers in the U.S. The organization provides health insurance to over 23,000 New York freelancers and their families through its social-purpose Freelancers Insurance Company.

What gave you the idea for Freelancers Union?

I wanted to figure out the next form of unionism, because people had begun working in a completely new way. Thirty percent of the workforce now earns its living as freelancers, contractors and temps.

When I began speaking with freelancers and independent workers in the mid-90s, their biggest concern was health insurance. I came into the field with no health policy background and didn’t carry any baggage. I approached the problem of changing the health care system by trying to help working people get the health insurance they need. Focusing on our members has been my North Star when deciding which strategies could work and which won’t.

When did you decide to start your own insurance company?

What we really wanted was to merge the ideas of Kaiser Permanente with union benefit funds, bringing in the best ideas out there. We recognized that you can do the most if you’re responsible for the money, and that we couldn’t accomplish our goals without creating an insurance company.

What did you learn from talking to your members about what they want from health benefits?

The biggest lesson, which we haven’t solved yet but have made strides toward, is that our members want to get more value in what they’re spending on their health and well-being, and they should. Americans pay out-of-pocket for extra efforts they make for their health, whether that means going to the gym, taking a yoga class, or purchasing healthy foods. Our health benefits should integrate efforts that keep people healthy, not only physically, but mentally, emotionally and socially. In places like northern Italy, you don’t have to be rich to eat well. We need that kind of culture change, and I like to think we can help.

What did you learn from starting your own insurance company?

I learned that you have to know what you’re trying to achieve and understand that there are risks, even if you are unsure what the risks are. You have to build a great team that can help search for what you don’t know. You need a board that has wisdom and experience in all aspects of the field. You have to always strive to do the right thing. In the short-term, you’re making changes that are central to peoples’ lives. Sometimes, this will make them very anxious and even mad at you. You have to reaffirm that there’s no alternative and stay on course to make the situation better. If you continue to communicate and build relationships with your members, their trust and support will come back.

That’s part of what I love about the Pioneer Portfolio and the zeitgeist of social entrepreneurship. When you’re working on complex issues, change and success take time. In current politics, government officials don’t have the longevity to do that right now because we’re not giving them enough space. So, the nonprofit sector has to step in and have the patience to pioneer and experiment.

What spurred you to pursue the CO-OP?

As you can imagine, trying to plan strategically during the past year has been challenging. As we looked at health reform, we thought about the opportunities and challenges for freelancers. We started tracking the CO-OP regulations two years ago because it concerned nonprofit health insurance. When the regulation passed, we applied for funding and began working with Nancy [Barrand, senior adviser for program development for RWJF’s Pioneer Portfolio].

What difference did the Pioneer Portfolio grants make?

Whether or not you support CO-OPs, there was $3.2 billion of support available and Nancy was one of the only philanthropists who even paid attention. That’s another reason I love the Pioneer Portfolio. It has a strong point-of-view about its mission, but is open to different strategies for solving problems.

What makes this strategy a pioneering idea?

Much of the focus today is on individuals, whether they have to get insurance through an individual exchange or a policy carrier. But truly, insurance works best in groups -- always has, always will. It’s important to set up these nonprofits that understand their members, and that can tailor benefits to what people actually need and make dollars go so much further. We are introducing the ideas of affinity, solidarity, and other ideals from the mutual insurance industry that built up cooperatives. I think that mindset makes our work pioneering.

Do you think this is a “disruptive idea”?

Yes. We started with freelancers, a part of the market nobody wanted or had cared about up to that point. Now freelancers and independent workers make up a third of all employees, and the workforce is moving in that direction. So I believe we’ve made an impact on how people traditionally think about the makeup of the workforce, as well as ways to offer health insurance.

What’s next?

It’s important to understand that we are not done yet. We need to move away from the fee-for-service system, go back to medical homes with integrated care, and foster thinner, curated networks. I think it’s important that we start to collect and publicly share data with members, doctors and hospitals to solve problems with health spending. We also need to integrate alternative care structures that support healthy behaviors, such as proper nutrition and exercise. We’ve structured the health system with these as fringe benefits, when they should be mainstream benefits. Freelancers Union is trying to change the culture by offering affordable, stable benefits to independent workers—showing that it can and should be done.

For more information on how Freelancers Union is expanding health insurance choices, check out last week's blog post by Nancy Barrand, senior adviser for program development for RWJF’s Pioneer Portfolio.

Patricia Flatley Brennan Discusses Project HealthDesign at TEDMED

We had the good fortune of catching-up with Project HealthDesign Director Patricia Flatley Brennan while at TEDMED this year. In this video Q&A, Patti discusses how Project HealthDesign is redefining the way we fundamentally perceive Personal Health Records (PHRs), away from a repository for health information and towards a “platform for action.” This includes enabling patients to track their “Observations of Daily Living” (ODLs) to better understand the state of their health and create an impetus to action.

Check out our interview with Patti and let us know your thoughts on ODLs and the work Project HealthDesign is doing.

 

A Conversation with Sam Faus at OSCON 2010

Last week we shared some of our experiences from this year’s O’Reilly Open Source Convention (OSCON). While we were there we got the chance to interview Sam Faus who spoke at the conference on Project HealthDesign’s Common Platform.  Check out the interview below and let us know what you think.

Tell us a bit about Project HealthDesign.

 

What is the Purpose of Project HealthDesign's Common Platform?

 

What makes Project HealthDesign's Common Platform unique?

 

Who - other than Project HealthDesign-funded researchers - will use the Common Platform?

 

Why is the Project HealthDesign Common Platform open source?

 

How can the open source community get involved in transforming the future of health and health care?

 

Grantee Interview Series: Diane Flannery, UCLA Family Commons

Last month we talked about the UCLA Family Commons, a Pioneer funded project that uses a retail-based model to deliver behavioral health prevention and early intervention services to families.  Last Thursday, UCLA Family Commons officially opened to the community.  

 

We asked Diane Flannery, director and co-founder of The UCLA Family Commons and the Global Center for Children and Families, to discuss her work and motivation for launching the project. 

 

 

Describe the work Pioneer is supporting you to do.

 

With the support of the Robert Wood Johnson Foundation’s Pioneer portfolio, we are launching our first family coaching clinic in Santa Monica, California. Called The UCLA Family Commons, it offers an inviting space, in a convenient retail neighborhood, that inspires families to reach their highest level of well-being.

 

We see this as a new model of consumer-centered mental health care that gives families the tools they need to become agents of their own well-being. All of our products and services are based on the highest quality research about what promotes healthy child development, and they are delivered in ways that are fun, engaging, and easy to incorporate into family’s busy lives.

 

 

How will your work transform the future of health or health care?

 

We believe our model has the potential to become a disruptive innovation that transforms treatment and delivery systems for common childhood problems. We aim to shift public perceptions about the role of prevention and early intervention in mental health care and the role families play in promoting and sustaining their own well-being.

 

Our long-term vision is to bring this model to scale in a way that makes prevention and early intervention for mental and physical well-being accessible to families throughout California and, ultimately, the U.S. Whether it’s through a nationwide network of family coaching clinics – similar to the Minute Clinics or other retail-based health clinics – or through a line of appealing, evidence-based family coaching products that could be found in every Wal-Mart or Target, we want every family to have easy access to tools they can use to reach their highest level of well-being.

 

 

Why does it fit within the Robert Wood Johnson Foundation’s Pioneer portfolio? How is it “pioneering”?

 

Our model is based on three key features:

 

1) affordable, action-oriented coaching that gives families the tools they need to address common family challenges and normal developmental issues;

 

2) convenient, inviting neighborhood locations that make services easily accessible and reduce the stigma sometimes associated with mental health care; and

 

3) a science-based model that offers families reliable information and proven techniques to change their behaviors and take charge of their health.

 

 

What inspires you to pursue your work? Your own personal curiosity? Your desire to improve health or health care? Something else?

 

My work has two primary sources of inspiration:

 

1) From working at the UCLA Semel Institute Global Center for Children and Families, I have seen firsthand how much wonderful research is available to assist families in creating healthy lifestyles that give children the strongest foundation for the future. I have also seen that too much of this research fails to reach the wide public audience that it deserves.

 

2) I am an entrepreneur at heart, and I get excited by developing creative methods to deliver information or services. As a parent myself, I have firsthand experience of the need for a place like The UCLA Family Commons. To be able to have easy access to reliable information that will help me create a life of wellness for my daughter and myself is no small thing. And to be able to get this information, and participate in these activities, in a community of like-minded people, makes an enormous difference in being able to live the healthiest life I can.

 

 

Have you encountered any unexpected lessons learned or ideas during the course of your funded project that has changed the way you think about it?

 

Creating The UCLA Family Commons took over five years, from the time we first started working on it. Over those years, we encountered a wide variety of barriers and setbacks – some expected, some not. There were even times when it seemed easier to give up the idea altogether. But we chose to pursue it, and we continued to bring in new people and to seek ideas and information from a multitude of sources. In the course of this work, the idea continued to evolve, to unfold in ways that were different – and often better – than what we’d originally imagined.

 

I see this as directly parallel to the way we encourage families to work toward building healthier lifestyles. It’s rarely easy to change your behavior, but if you start small, stick with it, are willing to let it look somewhat different than you’d originally envisioned, and find a community of people who want the same things, you will succeed.

 

David Eddy, Opening Doors to the Future

I have heard David Eddy present a half-dozen times, and each time come away with a richer appreciation of the door to the future he is opening for us. He was at the Foundation talking to staff today, and presentation stood out as being special because he started with an historical perspective of how we have defined quality of medical care over time, moving from qualitative judgment to quantitative measurement as the data and tools for modeling have improved.

And while he is somewhat modest, it is clear that David has figured prominently in that history, challenging the system to evolve as new data and methods have been developed. He gave us the concept of evidence-based medicine when we had none. He helped to create the HEDIS measures and gave us evidence-based guidelines of care for population-based health measures. Now he is giving us personalized guidelines which will be aggregated to develop new Global Outcome (GO) Scores for accountable care organizations to manage the health of their members.

It cements in my mind the importance of creating ARCHeS to give many more policymakers access to the power of the Archimedes model that David and his colleagues have developed.  I feel like I have had a glimpse of the future, and we really could have the best health care system in the world.

Healthy Conversations: Paul Tarini

Andre Blackman's Pulse & Signal has an interview with Pioneer Portfolio Team Director Paul Tarini.

Make sure to check out the original post here.

A Model for Equity in Specialty Care, Part IV

The Pacific Vision Foundation, with support from the Pioneer portfolio, is piloting a new clinic in Northern California that will provide the same level of specialty care and other services to all patients regardless of ability to pay, while maintaining sustainable profit margins. Over the last week, David Green and David Roe, two of the project’s leaders, joined Pioneering Ideas to discuss the inspiration and behind their work and the challenges and implications. Below, find out why they believe the Pacific Vision Foundation might serve as a valuable model as the national health reform dialogue plays out.

 

What do you see as some potential long-term implications for health care?

David Roe: One of our marching orders was make this work within the existing system, not assuming or banking on any change from health care reform.  Within the existing system, the implication of success in ophthalmology would be that the same approach could work in other medical specialties – particularly ones that use repetitive procedures that take lots of expensive equipment – so that the more patients you put through, the higher the efficiency you can get. Cardiology, for example, certainly comes to mind. And of course, if health care reform does increase support for low-income patients, the economics of this approach will only get better.

 

A Model for Equity in Specialty Care: Part III

Last week, in Part I and Part II of our series, David Green and David Roe discussed the business model for the Pacific Vision Foundation, a self-supporting eye care center in San Francisco that will provide equal service to paying and non-paying patients. Today, they join us to discuss some of the challenges they face let us know when they expect this operation to be up and running.

What have been some of the major challenges in moving this forward?

David Green: In India, there are many procedure-oriented specialties or subspecialties in medicine that have a self-financing model, where it’s basically the same procedure performed over and over again, where you have para-medicals trained to do just a few things rather than many, and that helps bring the cost down. So how do you have the right clinical and business model combined with more affordable consumables in a procedure? It all adds up to how you source your goods, how you train your people, how you acquire and organize your patients.

David Roe: Given the legal differences and the very different regulatory structure for medicine between the United States and places where this has worked before, as well as the very different income expectations, it was natural to question whether this can work here in the U.S. The answer is, while there are some serious challenges, nothing in the law, business structure, or medical regulations stands squarely in the way. The big obstacle is the notion that since it’s never been done here, it can’t be – the intellectual inertia, or gut inertia. You can’t point to this city or that city and say, “There’s your example.” A lot of our work is to help overcome that inertia. Once you’ve done one, then it’s much easier to recognize that it’s doable.

A Model for Equity in Specialty Care: Part II

Yesterday, David Green and David Roe discussed the inspiration and history behind their work to create a self-supporting eye care center in San Francisco that will provide equal service to paying and non-paying patients. Today, they join us to discuss the business model of this project. Visit Pioneering Ideas again on Tuesday to learn about some of the challenges they face and when they expect this operation to be up and running

 

What is the business model for the new clinic you are creating?

David Green: The notion that this kind of specialty care can be provided in a self-sufficient business model is very attractive and compelling, but also sounds impossible. I think the main obstacle is that by serving low-income people, doctors initially think that somehow they’re going to make less money. What actually happens in practice is that they make more money as the practice becomes more like a hybrid model, where the volumes are higher, costs are lower, and margin is greater per surgery. I’ve seen many instances where the work to reach lower-income strata helps to bolster overall profitability and also the amount of money going into the pocket of those involved. It’s quite counterintuitive to think that if you serve low-income people that somehow you’re going to make more money, but that’s in fact what’s been going on. 

Debra Lieberman on Health Games Research’s new Call for Proposals

Today, Health Games Research released their second Call for Proposals: Health Games Research: Advancing Effectiveness of Interactive Games for Health. We will wrap up our week-long conversation with Debra Lieberman, Ph.D., director of Health Games Research, with a discussion about this new funding opportunity.

Debra, can you tell us about the types of grants that will be available through this Call for Proposals?

The focus of the Call for Proposals (CFP), both during the first round of funding and now, is on research that will discover principles of health game design. This year the funding limit is higher: $300,000.  The money must be used primarily for research and only a small percentage of the grant – no more than 25 percent of the funding – is permitted to be used for developing game software or technology that will be used in the study   Also, like last year, the research must focus on a physical activity game that motivates people to get up and move, and/or on a self-care game that motivates people to engage in prevention, lifestyle improvement, self-management of chronic conditions or adherence to their treatment plan.  As we saw last year, these guidelines keep the program focused, yet they are not so restrictive that we don’t see a wide range of research issues addressed, game platforms used, game genres, research questions or study populations in the funded projects.

Are there specific things that you’re looking in this round of grantees?

We are looking for projects that focus on physical activity games and self-care games. The games may appear on any platform, with any genre, but they must be well designed and have theory or evidence demonstrating the game’s effectiveness.   

How can people learn more about this funding opportunity?

The complete Health Games Research Call for Proposals is available at http://www.healthgamesresearch.org  Additionally, there will be two optional web conference calls for potential applicants on February 11, 2009 (3 p.m. ET) and February 19, 2009 (4 p.m. ET).  Proposals are due by 3 p.m. ET on April 8, 2009. The conference calls are great opportunities for potential applicants to learn more about the program and to ask questions about the CFP requirements.

 Are there any tips you want to share with potential applicants?

The best tip I can give is to encourage applicants to read the Call for Proposals carefully and make sure that all the criteria and requirements have been met. Make sure your research team has the skills required to carry out the proposed project and that you are realistic about the budget and time line. Be sure to provide a good theory-based justification for your research plan, too. What are your hypotheses? Are they based on any theoretical knowledge and findings that already exist, and how are you taking your study to the next level? And be sure to include a dissemination plan for your work and explain how your findings will help us improve health games in the future

Thanks so much to Debra for taking the time to talk with us.  Health Games Research is taking on some really exciting work and we look forward to following the progress of the project's grantees. 

More from our conversation with Debra Lieberman

Today, we continue our discussion with Debra Lieberman to learn more about the Health Games Research national program and the work of the program's twelve grantees.

Debra, can you give us an update on the first round of grants?

We selected 12 grantees in the first round of funding for Health Games Research last May. The 12 grantees, awarded up to $200,000 each, are leading one- to two-year studies of games that engage players – ranging in age from eight to 98 – in physical activity games or games that motivate them to improve their self-care.  For example, our grantees at the University of Southern California are testing the role of social support and coaching, delivered on line, in improving and maintaining a healthy lifestyle. They have developed a game that uses players’ friends and family as coaches.

A team at the University of South Carolina is looking at physical activity games, such as Dance Dance Revolution and Wii Fit, as therapy interventions for people who have had a stroke. Many patients receive physical therapy for a set period of time after a stroke, but there is a need for continuing physical therapy after the initial therapy sessions are done. Perhaps there is a game-based solution for ensuring ongoing therapy for stroke patients.

A team from the Maine Medical Center is investigating family interactions around the popular dance pad game Dance Dance Revolution with families that have at least one overweight child. The grantees are asking the questions, how do family interactions affect the child’s physical activity and what effects does the child have on the family’s activity? 

What has surprised you about the first round of grantees?

I’m not surprised, but I’ve been very pleased at the diversity of grantees’ areas of expertise and populations of focus. Many of our grantee research teams include medical experts, game designers and researchers so they are well equipped to develop powerful, effective health games.  The populations they are studying range from children to seniors, from people dealing with addictions and substance abuse to those dealing with chronic conditions. One of our grantees is studying seniors’ responses to stationery bikes that enable them to bike through virtual worlds. Another grantee is developing a game to motivate Cystic Fibrosis patients to engage in respiratory exercises and to inhale their medications.  So, I’m very pleased with the variety and scope of these projects and I should add that we are learning a lot from all twelve grantees.

How will Health Games Research impact health and health care in the short term, and in the long term?

At Health Games Research, we are working in the short term to help build the field by supporting high-quality research that will lead to the creation of impactful games. We want to build interest in the creation and use of health games, and we want people to see how much learning, understanding and behavior change can be stimulated by a fun, exciting, well-designed game.

In the long term, we will provide research findings and resources that will enable many more people and organizations to design and produce effective health games – especially on some of the newer game technologies.  For example, games can now receive input from sensors and monitors, such as GPS devices that identify players’ geographic location, accelerometers that record how much walking they have done that day and heart rate monitors that report aerobic activity.  What fun to integrate these kinds of data into the state of a game, with an eye toward health promotion and behavior change! 

I also expect to see our research influence the design of mobile health games and games delivered on electronic toys or robots. Almost any interactive technology could provide a health game if designed with a little creative ingenuity and a solid foundation of theory, evidence, and understanding of the way people respond to games cognitively, emotionally, socially and physically. I believe that our research will lead to better game design and by engaging the health care community, policy-makers and game designers in this effort, our program will potentially lead increase the uses and effects of games for health behavior change.

Tomorrow, we will post the last part of our interview with Debra in addition to the new Call for Proposals being released by the Health Games Research program.

Talking with Debra Lieberman: Building the research on how games improve health

Today, we continue our discussion with Debra Lieberman to learn more about how Health Games Research is working to advance the research and design of health games and is contributing to building the health games field.

Debra, yesterday you introduced us to Health Games Research and its efforts to build the research for the health games field. Today, can you share any examples of games that highlight the potential for games to improve health?

Two games, both that I helped design, come to mind.  The first is Packy & Marlon.  Made for the Super Nintendo platform in the mid-1990’s, Packy & Marlon is a diabetes self-management game that was designed to reduce the stigma of diabetes among children and teens, increase their diabetes knowledge and self-care skills, foster communication with family and friends and improve self-efficacy for diabetes self-management.  The game centers on two diabetic elephants, Packy and Marlon, who arrive at diabetes summer camp and discover that rats and mice have marauded the camp and scattered all the food and diabetes supplies.  Players, taking the role of the two elephants, must search through the mountains, rivers, forests, playgrounds and haunted cabins to find these items, select a balanced diet of three meals and three snacks a day, measure their blood glucose and take insulin. 

We conducted a clinical trial with diabetes outpatients, ages 8 to 16. Participants were given a Super Nintendo console and were randomly assigned to receive Packy & Marlon or an entertainment video game that had no health content.  After six months of having the game at home, there was no change in number of annual diabetes-related urgent care and emergency room visits among the group that received the entertainment game. We found that the treatment group that received Packy & Marlon reduced their urgent care and emergency room visits by 77 percent.

 The second Nintendo game I helped design is the asthma self-management game, Bronkie the Bronchiasaurus.  In this game, players take on the role of Bronkie, a male dinosaur, or Trakie, a female dinosaur,  who are trying to save their planet and recover a mighty wind machine that keeps away deadly dust. The characters have asthma and the player must guide them through the game where they have to avoid asthma triggers, such as dust, pollen, smoke, furry animals, and sneezer characters who intermittently sneeze out cold viruses.  Players must check their character’s peak flow (breath strength) and take medications if they have bumped into too many triggers.  The asthma-related activities in the game provide almost unlimited opportunity to rehearse asthma self-management skills. The game was tested in clinical trials and found reductions in player's asthma-related urgent care and emergency visits of about 40 percent. The game also reduced children’s missed school days and parents’ missed workdays due to their child’s asthma by about 40 percent as well.

Another well known and well-researched health game is the cancer education game, Re-Mission. Designed to explore the inside of various cancer patients’ bodies, the player takes the role of a nanobot named Roxxi, who blasts away cancer cells with chemotherapy and delivers other treatments to the patient. Clinical trials found that the game increased cancer patients’ cancer knowledge, self-efficacy for cancer self-care, and adherence to one’s treatment plan.

How are you hoping to engage health care providers and game developers in the work of Health Games Research and its grantees?

Health Games Research aims to improve the quality and impact – and of course, the quantity – of basic research that will help us understand how people respond to specific features of health games cognitively, emotionally, socially and physically. This will help us discover principles of health game design to use in developing future games. We want this research to stimulate more interest and involvement in the field, and to set high standards of quality for research and for health games.      

We know that health care providers want evidence that treatments they recommend to their patients are efficacious—that they work. If a health care provider is going to prescribe a game to their patients, or implement games in their clinics, they’re going to want to know if those games work, include current medical information and were designed with state-of-the-art techniques. They need data in order to take a game seriously.  To engage health care providers, we must be able to respond to their requirements for data and evidence regarding a particular game’s effectiveness and, more generally, we must be able to show them the wide variety of health games and their benefits and clinical outcomes as evidenced in research so far.

This type of research is essential in the health care industry, but it is usually not required in the game publishing industry, so it is our job to demonstrate the benefits of applying research toward the design and production of games meant to change health behaviors.   We want to encourage game developers to invite researchers and behavioral health specialists to be part of the design team, even at the earliest stages of game design, to help determine the goals of the game and to use theory and research findings as the basis for health-related design decisions. Without dampening a game’s creative spirit and uniqueness, the goal is to integrate game design elements that are known to improve health.

Check back tomorrow for part three of our interview with Debra Lieberman and an update on the work of the current round of Health Games Research grantees.

Conversation with Pioneers: Debra Lieberman

This week, as part of our Conversations with Pioneers series, we talk with Debra Lieberman, Ph.D., Director of Pioneer’s Health Games Research national program.  Debra is a lecturer in the Department of Communication at the University of California, Santa Barbara, and also a researcher in the university’s Institute for Social, Behavioral, and Economic Research (ISBER).  Her research focuses on process es of learning with interactive media, especially in the areas of health communication, interactive games for learning, and children’s media.

This Thursday, January 15, Health Games Research will release its 2009 Call for Proposals. The CFP will provide an opportunity for universities, government agencies, medical centers and nonprofit organizations to submit proposals for research projects that will investigate how health games can be designed and used to improve players’ health behaviors and health outcomes.

We thought this would be the perfect time to check in with Debra to learn more about the program, the first round of grantees and her expectations for Health Games Research’s new grant solicitation. We will feature our conversation with Debra here on the blog over the next few days.

Debra, can you tell us a little bit about the background and mission of Health Games Research?

Health Games Research is a national program of the Pioneer Portfolio aimed at advancing the research and design of digital games intended to improve people’s health. About $2 million was awarded to 12 grantees in the first round of funding in 2008, and our second round of funding – awarding roughly another $2 million – will be announced this Thursday.

Our mission is to improve the quality and impact of interactive games that are designed or used to improve players’ health-related behaviors and outcomes.  To reach this goal, we support research that will identify evidence-based principles of health game design, which can then be implemented in future health games.  Our current grantees are investigating a variety of design principles involving, for example, (1) how best to provide performance feedback, from a game and from other people, to players who are trying to improve their eating habits; (2) methods for engaging players in interactions with fictional characters and immersing players in a compelling story, to motivate them to get more physical activity; and (3) strategies for using an “exergame” such as Wii Fit or the dance pad game Dance Dance Revolution to help stroke victims develop better balance and range of motion.  In addition to awarding and supporting grants, Health Games Research provides information and resources related to health games, and serves as a champion for and builder of the field.

How did you become involved in the health games field?

I have always been passionate about the use of media for learning and behavior change. I have worked in this area for 35 years, beginning with educational television, when I worked and trained with the Sesame Street researchers and producers while studying at the Harvard Graduate School of Education in the early 1970s. There, I learned about the Sesame Street approach to designing educational media, which integrates researchers into the design process. In this approach, there is respect for both the art and the science of media design. The creative team is free to be creative and the research team contributes its expertise about the capabilities and interests of the audience, and how they learn, and it conducts research during the formative stages of design to make sure the audience is learning.  Together the team develops a product that is not only entertaining and fun, but also evidence-based, field tested, and educationally effective.

I worked in educational television in the ‘70s, and in the ‘80s I worked in educational software and got my Ph.D. in communication research at Stanford.  After a short time teaching at Indiana University, my life circumstances brought me back to Silicon Valley where, in the early ‘90s, I became involved in health games, joining a company as their VP of research to help them figure out how to design Nintendo games that would improve players’ prevention and self-care behaviors in areas such as diabetes, asthma, and   smoking prevention. This work brought together so many of my interests in learning, behavior change and interactive media in ways that could potentially make a difference in people’s lives.  And our games were successful!  Our diabetes self-management game, Packy & Marlon, reduced players’ diabetes-related urgent care and emergency visits by 77 percent. 

Why Games?

As I see it, games are the most interactive form of media we have today. A good game gives players a great deal of control, more than many other forms of interactive media, and feeds back information to players about all the actions they have taken and choices they have made. Games engage players by offering a challenge to reach a goal, and players often get hooked on that challenge, striving to get a better score, trying to get their character to the next level, or developing strategies to beat their opponent or whatever it is that really gets them involved…it’s that challenge! Interactive games are popular because they are deeply engaging.  These days, we spend more money on games than we do on movies. And people willingly spend a lot of their leisure time playing them. This is where many people live, and it is in an incredibly interactive and rich environment for learning, skill development, skill rehearsal, and other activities that, when well-designed – remember the Sesame Street approach – can motivate and support significant health behavior change.

Check back tomorrow for the second part of our interview with Debra.

About Debra Lieberman

Debra Lieberman, Ph.D., is a communication researcher at the Institute for Social, Behavioral, and Economic Research at the University of California, Santa Barbara (UCSB).  Her research focuses on processes of learning and behavior change with interactive media, with special interests in interactive games, health media, and children's media.  At UCSB, Debra directs the Health Games Research national program funded by the Robert Wood Johnson Foundation’s Pioneer Portfolio to advance the design and effectiveness of interactive games intended to improve health.  Debra has published widely and she consults for health organizations, education agencies, and media and technology companies to help design and evaluate interactive media for entertainment, learning, and health.

Wrapping up with Candice Kane

Today, we wrap up our conversation with Candice Kane of CeaseFire with a look at how workers are responding to trainings in Second Life and some thoughts on the potential for virtual worlds to help advance the violence prevention field in addition to other community health interventions.

 

How has your staff responded to these new trainings in Second Life?

The workers have responded very well. The beginning was a bit bumpy. We brought in a small group of workers that really didn’t know anything about computers and had no concept of virtual worlds. So the initial response was a little bit skeptical, I think they were concerned that they wouldn’t be able to do it, and we had a couple folks who struggled early on. By the end of the first training, they all said, “This is really cool. I really want to learn this. I want to do this.” And for those that had any computer sophistication at all, they were off and running in an hour’s time. They were doing all kinds of things with their avatars -- changing body shapes, outfitting their virtual selves. Some even went a bit overboard with their virtual bling. We had to remind them that you can’t be out on the streets, real or virtual, with all that flashy jewelry. So for them it’s fun. It’s entertaining. And it is giving them the opportunity to develop not only the violence prevention and mitigation skills they need for the job, but also computer skills and problem solving skills.  It has also empowered the staff to take ownership of the training. In fact, one of our violence interrupters has volunteered to take the lead on training other workers. So, we are excited to see the peer-to-peer training that virtual world enables.

 

 

An image of a violence interrupter practicing in Second Life.

 

Where do you hope to go with Second Life? 

Right now we are just using Second Life for training with our Chicago team, but we are looking to get Baltimore and other cities up and running soon.But more than that, we see enormous possibility for how we can use Second Life to empower individuals and to prevent violence.

Elena Quintana, who heads our evaluation unit, has her doctorate is in psychology. As a clinical psychologist she talks a lot about social distance, and the social distance that both our workers and our clients have to cover to become part of mainstream society, even to reach just the fringe of mainstream society. I think Second Life really offers us some potential there, because there are a lot of things that our workers and clients don’t have experience doing – things that are unfamiliar to them. And when you’re 25, 30, 35, you’ve been in prison for 15 years, you’re just coming back, and you don’t know how to get your own apartment, you don’t know even how to take public transportation, you don’t know how to do things that an 8 or a 10-year-old kid can do, there’s a reluctance to admit it. We’ve talked about doing things in Second Life that are self guided, so that someone can go in and practice certain skills without needing a supervisor or co-worker to be present. And if we can get to that point, then that really opens some doors for people, where they don’t have to admit that they don’t know how to do things. I’m also exploring to see if there are ways we can do more literacy training and job training – like having our workers practice doing job applications on line. We really see Second Life as a portal to so many skill development opportunities.

Is there anyone else in your field that is already or considering using Second Life?

I’m not aware of anybody. We did a presentation at the Second Life conference last summer, when we were just getting into this. We had some still images and a two-minute video to share.  There were a lot of folks that came up to us and said, “Wow, this is really cool. Keep us posted.” But there were not too many social service types. As I’ve been out and about, I’ve been talking about it with other groups, and there is a lot of interest out there. We have seen interest from some organizations that are exploring how to use virtual worlds to provide counseling to people who are sexually assaulted. I think that there are some real opportunities for victim services and other areas. It’s just a question of helping them understand the technology and then overcoming some financial hurdles, which are really not as substantial as they would’ve been some years ago.

Thanks so much to Candice for taking the time to talk with us.  It is clear that CeaseFire is out in front of leveraging the use of virtual worlds to drive social change and we are so excited about the work they are doing and the results they are achieving.

More on Second Life from Candice Kane of CeaseFire

Today we continue our discussion with Candice Kane of CeaseFire to learn more about how their organization is using Second Life to train outreach workers and violence interrupters as part of a national effort to prevent violence.

 

How did you make the connection between your training efforts and Second Life?

A couple years ago, we were tossing around the idea of doing some type of CeaseFire game.  A couple of us had the opportunity to participate in a regional Games for Health meet-up in California where we learned a little bit more about how games were being used to promote health.  We talked with Ben Sawyer about our interest in using games to prevent violence; he was excited that we were thinking about games, but encouraged us to think more about what were going to do with the game, what we wanted to accomplish and what would be the potential challenges. We brought these ideas and questions back to our colleagues at the Center for the Advancement of Distance Education (CADE) here at the University of Chicago and someone said, “Have you thought about Second Life?” Given our interest in using games or interactive technology for training, a number of folks felt it would be a good fit.  

 

The first time I got a look at Second Life, I thought, wow, this is a great opportunity for us to create a forum where people can practice violence interruption. Conducting CeaseFire training sessions around the country is really cost prohibitive for us, but we saw quickly that Second Life would enable us to reach a broader audience and train workers in a safe and engaging environment.

What went into the development of your space in Second Life?

At this point, we have two islands in Second Life. CeaseFire Island was our first project. The initial challenge was to develop an environment that replicated the look and feel of the Chicago neighborhoods where CeaseFire was focused. Working with the developers at CADE, we went into our neighborhoods and took pictures of the houses, buildings and streetscapes.  The developers we worked with were terrific, but I remember seeing the first designs and saying, “This is too clean. This is too neat. We’ve got to mess this up. We need litter. I want graffiti. I want to board up some of the buildings.” The creative team looked at me like, “You want to mess up my building?” “Yes!” It was very important to me that the Island look like the neighborhoods where we spend our time, and our neighborhoods are messy.  So we spent a lot of time to get the look right, and now we even have a backdrop of the Chicago skyline. Our second island, CeaseFire Isla is adjacent to CeaseFire Island and is largely Latino in look and feel.

 

The pictures below show how the CADE developers and CeaseFire team used neighborhood photos to develop sketches that eventually led to a realistic virtual world.

 

 

 

Check back tomorrow for the last part of our conversation with Candice. And to learn more, be sure to visit the CeaseFire website at www.ceasefirechicago.org.

Conversation with Pioneers: An interview with Candice Kane

This month we continue our Conversation with Pioneer Series with Candice Kane, the chief operating officer of the Chicago Project for Violence Prevention and the organization’s CeaseFire initiative. CeaseFire, which is funded through the RWJF’s Vulnerable Populations Portfolio, works with community-based organizations and focuses on street-level outreach, conflict mediation, and the changing of community norms to reduce violence, particularly shootings. Launched in 2000, CeaseFire treats violence like a public health epidemic that can be prevented.  The program engages the community to work with people at high risk of being involved in violence to provide on-the-spot alternatives to shooting and change social norms about gun violence. A recent evaluation of the program has demonstrated its effectiveness in reducing the size and intensity of shooting hot spots in targeted Chicago neighborhoods.

Susan Promislo blogged about CeaseFire over the summer and highlighted the organization’s use of virtual world tools and techniques to advance their anti-violence mission. We were fortunate to have the opportunity to talk with Candice Kane further about their use of Second Life and their innovative approach to training outreach workers and violence interrupters.

What role does Second Life play in your anti-violence efforts?

Perhaps the most vital component of CeaseFire are the violence interrupters and outreach workers. These are street-smart individuals, many of whom are former gang members, who give back to their neighborhoods by mediating high-risk conflicts and reducing violence – specifically shootings. There are three areas that our outreach workers and violence interrupters need to master to be successful in their work. They have to be able to identify and engage clients; they have to be able to relate to the community; and they have to be able to mediate and resolve conflicts, anticipate retaliatory action and intervene before something happens.

When we started training our outreach workers and violence interrupters, we were using a lot of role playing to simulate the situations they would need to mitigate. It was clear that for some people, approaching and talking to strangers was difficult and intimidating, understandably. Our outreach workers are very effective with people they already know and most of our workers know many of the people in their community. However, there are going to be occasions when our outreach workers and violence interrupters need to approach people they don’t know or need to approach people in threatening situations, and we wanted to help them build their confidence for these types of interventions.

We’re trying to make Second Life a core component of our training for violence interrupters and outreach workers. It is a safe environment that lets the workers navigate these types of interactions and practice approaching strangers or threatening situations.

What has been the value of moving to a virtual world for training?

Most of our violence interrupters and outreach workers are former gang members. Most of them have been in prison for violent crimes and some have served more than 20 years in jail. As you might expect, many of them don’t have formal employment experience. Their reading and comprehension skills vary from the 6th-8th grade level to college level; most they don’t write a lot and, since they don’t work with computers on a regular basis, are not computer literate.

So, it is no surprise that it is not practical for us to use written materials in our trainings. It means that our trainings need to focus on learning through doing, not reading or even through oral presentations. Our outreach workers have to observe, they have to do it own their own, they have to practice and get feedback on how to improve. Second Life has given us the space for that practice and that doing. And more importantly, it is fun for people, especially if you give them a few Linden Dollars so they can go out and buy their own outfit.

Can you share some examples of what happens on CeaseFire Island?

Second Life gives the workers a chance to practice different scenarios. Their worker’s avatar might need to approach a young guy, played by a CeaseFire staff member, who is on the streets dealing drugs, waiting for his next buyer to come by. The worker might have to deal with a hostile response if the client feels the worker is interfering with a potential sale. The interaction gives the worker the opportunity to think about the whole process of approaching someone. What signals do you look for? What do you have to be aware of, in terms of what’s going on around you? What if there are three people standing together and they seem to be in a conversation? Or if it’s a heated conversation, would you even walk up to them? Why would you walk up to them? Why wouldn’t you walk up to them?

We have a scenario where we actually have done some filming and we show somebody taking the brochure, and then throwing it on the ground and going, “I don’t need this shit.” How do you handle that? What do you say? What do you do? How do you know when you may be threatened? So Second Life gives us the opportunity to play out those scenarios and then debrief on what worked and what didn’t.

We also put a lot of effort into helping our clients rethink their life and their behaviors so there are structural and cognitive behavioral changes that we’re looking for, things like getting a job or seeking help to kick a drug habit. It is important for our workers to think about how they help others solve problems. There’s a temptation with our workers, and probably most of us, to immediately go to solutions. Someone says, “I need a job,” and so the inclination is to say, “Well, I know they’re hiring over at the store on the corner, why don’t you go over there tomorrow and put in an application?” Well that’s not what we want the workers to do. We want them to be a coach, an advocate who will help the client understand why they want a job, what type of job and help them acquire the skills they will need to be successful at a job.

Check back tomorrow to hear more about how the outreach workers and violence interrupters are using CeaseFire Island and have responded to trainings in Second Life.

About Candice Kane: Candice M. Kane, Ph.D., J.D., is the Chief Operating Officer of the Chicago Project for Violence Prevention, a strategic public health initiative to support community-based and city-wide violence prevention. Her responsibilities with the Chicago Project include day-to-day oversight of all program activities, including those related to CeaseFire, the campaign to stop shootings and killings, and evaluation. In addition to her management duties, Dr. Kane is actively involved in the framing and implementation of policy, program development, drafting of program-related materials including training curricula and brief performance reports, and budget projections. Prior to joining the staff of the Project, Dr. Kane was director of a state planning and research agency and part of the University of Chicago team that developed, implemented and tested the Office of Juvenile Justice and Delinquency Prevention Comprehensive Gang Model.

Patti Brennan: Looking Ahead

Today, we wrap up our interview with Patti Brennan, Director of Project HealthDesign with a look towards the future. We thank Patti for her thoughtful responses and look forward to seeing the work of the Project HealthDesign grantees during tomorrow's event.

The health care and technology industries will play a significant role in the future of PHRs, who else are you watching as possible pioneers in this field?

I look to John Maeda, who sits on the Project HealthDesign advisory committee (and was inaugurated as the 16th President of the Rhode Island School of Design last week). John is amazing, absolutely amazing.  He is constantly think about how new technology enhances simplicity and enables people to live simply.

I look at industries that have restructured their distribution model. iTunes is a big one for me. I find that fundamentally rethinking something of value and repacking it in a way that enhances its accessibility to people is one of the things we need to look at.

I think about the gaming people, and I think about them not so much because of educational games – that is learning something in games – but rather finding something inherently pleasurable in playing games that leads people to do it more. And basically, we want to find the element in health that would lead people to “do” health more.

But let’s look a little more near-term. There are a couple of folks that I think will play a key role in operationally getting PHRs into people’s hands in a way that improves their health. I focus on the people who are trying to get PHRs into patients’ hands, not PHRs into the hands of providers to improve the clinical workflow. I think Kaiser Permanente has made great strides with KP online. I think it is great that their online system lets patients schedule their own clinic visits or look up their laboratory test results. But these two activities were previously managed by a paid health care staff person and now they’re happening as self-management. I think that’s fine, but I don’t think that’s where the real innovation is. I look at Indivo. Ken Mandl, Isaac Kohane, and their group, because I think they’ve really got an edge on the privacy and patient-controlled access issues and that is really, really important.

I’ve been fortunate to know James Ralston, who’s one of our grantees, for a while, but I’d never gotten to know him as well as I did through this project. And I will tell you that I’ve always watched him with a little bit of edginess, because he’s a physician, and he’s a doctor’s doctor, and he speaks of PHRs as they enhance the physician’s abilities to deliver what physicians believe is good care. I think that’s fine, but, again, not enough. But through this project, I’ve really gotten to understand that his view of physician practice is enormously patient-centered. And so when he talks about getting physicians to have better tools, he talks about it in a very patient-centered way. So I think people who are “bridge” people, like James, bridging the lay view and professional views, are really some of my heroes.

And finally, I look at patients. You know, we spent a long time looking inside people's kitchens and bedrooms to see what they do to manage their health data. They do amazing things. They really do. When they’re trying to remember stuff, when they’re trying to keep track of things, they do very, very clever things, and sometimes under a great deal of adversity. And so I look to the way people have managed their environment to accomplish what they understand their health goals to be. I think if we start with what people already do well and build on it, we’ll have the greatest chance of success.

Project HealthDesign has played a significant role in shaping the advancement of personal health records, how will the nine project teams continue to advance this field?

We were fortunate in that most of our grantees came from active organizations, already pursuing patient-focused tools for health promotion or health care. And so what Project HealthDesign did was let the grantees explore in a more, if you will, fanciful way what the tools of the future might look like. In turn, that’s helped drive some of their local activities, and now we have teams that have already started to seek out additional funding or bring additional information or expertise into their other applications. We also have some grantees who have been partnering with other groups in their regions to take their Project HealthDesign work and build it into new tools.

I think that there’s a good chance that one of the things we’ll come away with is greater awareness on the part of some of the funding bodies about the new investments that are coming. Now, I’m not sure that’s going to, in the short term, enable the grantees to identify new funding sources by the spring. But I hope that it will encourage both the funding agencies and the grantees to continue thinking about how PHRs can enable new kinds of research, both genomic-based research, as well as health care delivery research.

Thanks again to Patti for sharing her thoughts and ideas with us. Check back later this week for highlights from the event and to link to the event webcast.

Patti Brennan: The challenges and opportunities for PHRs

Friday, we talked with Patti Brennan, Director of Project HealthDesign, about this week's Project HealthDesign event in Washington, D.C. Today, we are focusing on the challenges and opportunities that lie ahead for personal health records.

What are the barriers that need to be addressed now in order to advance this new vision of PHRs?

I think there are two really significant issues we need to be paying attention to: privacy and incentives. Right now, our privacy policies tend to be organized around institutional responsibility for safeguarding data that’s generated during the business process of health care; that’s very important and that will never go away. I’m not suggesting we shouldn't have that focus, but that focus is insufficient and, frankly, cannot be extended easily to the idea of personal health records.

Personal health records are actually, if you will, globules of data and action tools, scattered all over the place. And so to create a model of health privacy policy that affects only one institution in a long chain of data management, and only specifics about the data and not, for example, the kinds of robust privacy-controlling mechanisms that consumers will need, is just not going to enable us to see the real benefits of PHRs. What could really work are policies that enable effective use of data while establishing rules for safe data storage, appropriate data uses and efficient patient control.

The second issue is incentives, and I want to talk about incentives from a couple of different perspectives. We often think about incentives as who’s going to pay for the PHR. To me, PHRs are quite a bit like iTunes. There are musicians that make the music. There are record companies that distribute the music. There is iTunes that provides a different kind of platform for distribution. But in providing that platform, they actually have broken apart CDs so that users only have to take the pieces they want. You don’t have to buy the entire album, just the songs you want. And iTunes offers other important services. They keep track of the music and movies you purchase. They recommend other songs you might like. So this idea of many players in a distributed market of health data suggests that there would be incentives, first of all, for creating various kinds of repositories and action tools, and they might vary quite a bit. So institutions, health care institutions, have an incentive to have good data management, because health data is a capital resource for the institution. But there are other reasons why a company such as Google might want to get into managing health data. Maybe it’ll draw more people to their site, and they can refer other sources or other products to them.

Another kind of incentive that has to be built in is the incentives for lay people to become more active in health management. These are less likely to be financial incentives, although I can imagine how financial incentives could be really quite important to this group. It’s more likely to be power-shift incentives. If a lay person is going to spend the time to record and understand information about themselves and interact with their clinicians about it, they need to be heard, and respected and brought in as part of the care team. So the incentive there--incentivizing lay people to be engaged in health--is as much a challenge to the lay person, to figure out how to grapple with all this stuff, as it is to the clinician to figure out how to work this into their idea of what a client-patient relationship is like.

The third kind of incentive is for physicians and nurses - the incentives to change their practice, which PHRs have the potential to do. Think about decoupling the moment of patient teaching that happens when a patient is discharged from the hospital, or the last five minutes of his medical visit, to a more extended period, where information could be distributed to the individual on a daily, weekly or monthly basis. That creates a challenge to the way clinicians generally behave. So if there is going to be a requirement to change provider practice, it has to be incentivized. Now, no longer can a clinician say, “Well, I told the patient in my office the six things she needs to do to ensure that she is taking this medication properly” and assume the case is closed. If we migrate from a one-time set of instructions to a more ongoing, interactive mode of communication, we have to help providers understand how to do that, the benefits of making this type of change as well as the potential risks.

We also need to look at how some state laws may interfere with clinicians’ ability to fully attend to information presented by a patient. Some state laws basically restrict the ability of a clinician to treat health data, as presented by a patient, in the same way as health data that were generated by a clinical care institution. So the blood test you capture at home is different than the blood test you got at the laboratory. Additionally, there are concerns on the part of clinicians about the enormous volume of potentially important details that might be hidden in a PHR, information that could be significant in care, and to the clinicians’ liability for potentially not looking at the PHR. So the incentive structure has to address this very delicate balance of liability, work flow issues, and clinician cognition when it comes to thinking about changing the work of patient care. I think that’s really far down the line, but I think it’s an important kind of incentive structure to be mindful of right now.

What is the Common Platform and why is important for the advancement of PHRs?

I am so glad you want to talk about the common platform. This is really important. The common platform is a set of software tools, rules and repositories that provide a common (i.e. similar) way of labeling all types of health data, from blood tests to observations in daily living, storing it in a systematic manner, and allowing a whole host of other computer applications to use the data without having to know all of the details about how and where the data are stored. 

For example, to a patient, the dispensing information of “take one tablet three times a day” isn’t relevant. But what becomes really relevant is “how much can I modify that dispensing? Do I have to be up every morning at 7:00 to take the first one? Or as long as I take it three times a day, separated by at least six hours, am I all right? ”It is about understanding how to interpret information. And so the common platform provides a way for bringing together the prescribing-dispensing information from a clinician and the consuming or dispensing information from the perspective of the patient.

Since the common platform is a set of software tools, there is actually computer code, and the computer code allows us to both experiment with and demonstrate that it is possible to separate data from applications, to build applications not really understanding exactly what the data structure is, and essentially have the common platform serve as a translator between the way the data looks originally and the way the application actually needs it. So it’s a little bit like how a recipe helps you take things from your cupboard and put them into a cake. The recipe doesn’t know where the butter comes from or where the flour is stored in your kitchen, but it does tell you if you have these things, you can bring them together and you can make a cake here. And so the common platform is the software equivalent of finding things from multiple sites and putting them together in a common way.

It is important to note that the common platform was built to demonstrate a very fundamental principle that we have in patient-centered computing, and that is patient control over data access at the level of the data element, not at the level of the data. So right now, if I give my physician permission to see my medical record, he sees the whole record. But I might want my gynecology records limited to only my women’s health practitioner and no one else, because I don’t think anyone else needs them. Now, I certainly am not talking about controlling what the hospital-based medical record shows, because that is a very different kind of a legal entity. But if I’m keeping really close track of my menstrual cycle and my sex life for a discussion with my clinician, I don’t necessarily want that shared with my dentist. And so being able to assign permissions on the level of data elements is really important. This is pretty complicated, and it gets burdensome to patients. Yet, it is important and that is why we have spent so much time working on the common platform and its role in advancing patient-centered PHRs.

There has been a lot of emphasis on the development of Regional Health Information Organizations (RHIOs) as a key element of electronic health information exchange. What is the relationship between RHIOs and PHRs, particularly stand-alone models? How can they best be integrated?

To me PHRs are essential to getting full value out of RHIOs. The value of RHIOs and the decision to sustain them has got to be because they’re going to do new things that couldn’t be done before. One of those things is being able to integrate patients into the health care system in a totally different way. And so if we think about the last ten feet of a RHIO extending into people’s bedrooms or kitchens, then we have an enormous potential for both reaching in with public health announcements and reaching out with observations about health status indicators across the community. This will help us better understand where there are needs that are currently not met. So the general idea of PHRs and RHIOs actually fits together really well and that’s really important.

Now having said that RHIOs and PHRs fit together really well, I think that they really require a different kind of visioning than we have now. I’d like to think about how physician and institution-directed PHRs can fit with patient-centered PHRs--and they’re really not in conflict with each other. As long as we don’t presume that there is a dominant binder or record that is the patient’s total life history, but rather think that there can be data from many places, that come together for many different kinds of uses. So I may want to pull all of my weight information from the six or seven doctors that have that here now in Madison, to be able to look at how my weight is changing over time, and that wouldn’t be able to be done with a PHR for Dr. X, and a PHR for Dr. Y, and a PHR for Dr. Z. It requires that instead we think about entities, like hospitals and clinics, being contributors and receivers of information with PHRs, engaged in the exchange with them, if you will, rather than being the point where they exist.

We’ll wrap up our conversation with Patti tomorrow with a look towards the future of PHRs and the Project HealthDesign grantees.

PHRs: Where are we now and where are we going? An interview with Patti Brennan

This month, as part of our Conversations with Pioneers, a series of interviews with Pioneer grantees, we talked with Patricia Flatley Brennan, R.N., Ph.D., the Director of Project HealthDesign, one of Pioneer's national programs. Patti and the nine Project HealthDesign grantee teams are getting ready for the National Forum on the Next Generation of Personal Health Records, an event that will showcase the work of the program and foster a dialogue about lessons learned from user-centered design and policy directions to support continued growth and innovation in the personal health record arena. 

New Frontiers in Personal Health Records: A Report-Out from Project HealthDesign and Forum on Next-Generation PHRs will take place on September 17, 2008 at the Westin Washington, D.C. Center City.  The event was highlighted on the blog last month and has reached capacity, but don’t worry, we will be webcasting the event at rwjf.org/pioneer. We’ll be sure to let you know when the webcast is available.

Can you give us a preview of what will happen at next week’s National Forum on Personal Health Records?
On September 17, we will be showcasing the work of Project HealthDesign and the program’s nine grantee teams. The showcase is designed to do three things. One, it will foster a dialogue with policy makers, patient association groups, consumer groups and academics about the new vision for personal health records (PHRs).  Two, it will be an opportunity to talk about and focus on the fact that PHRs are not just about PCs, but rather tools that can be used with cell-phone platforms, spoken interfaces, PDAs and television interfaces--all sorts of visionary and innovative kinds of interactions. Three, it will explore the future of PHRs and the policy implications for advancing this field.

The morning sessions will focus exclusively on what we’ve done in Project HealthDesign at the level of our nine grantee teams. The nine teams will share their work and talk about key themes that have emerged over the course of the project. The first set of presentations will shed light on the idea that PHRs are more about action than about data management. There will be a panel that focuses on potential types of interfaces for PHRs other than PCs. A third panel will discuss the shifting focus from the health data that healthcare providers believe are important to information that patients find useful in their everyday living. While clinicians might want to know about the dose of a medication the patient is taking, the patient might find it much more useful and important to know whether or not that medication can be taken at 5:00 in the evening or whether it has to be taken at a specific time interval throughout the day. It might be that a patient wants to tell you more about their mood and their attitude, than their weight. It might be more important for the patient to describe family dynamics during a meal, rather than what was on their plate. We would call these observations in daily living, and they have to do with the markers patients use to know how their day is going or whether their health is progressing according to plan. Patients construct health in very personal ways, and we want PHRs to serve as an effective tool in managing their own constructs of health.

Will there be an opportunity to see demonstrations of the grantees’ work?
Throughout the day, we will be hosting an expo that will give attendees the opportunity to talk to the grantees individually about their research and view their PHR prototypes. Some of our teams will have devices available for people to actually use and manipulate. Others will have storyboards to explain how their applications work, how they tested the applications and the response and input they got from patients. And all of the grantee teams will be sharing video depictions of patients using their PHR applications in the real world.

What do you personally hope will come out of this event?
I would like to see anyone who’s involved in setting federal policy, whether it’s through association-level work like AMIA, or CMS, leave with an idea that PHRs are more than data tools for patients. They’re action tools.

I want people to leave the event realizing that there is not a single PHR that we’re all going to adopt, but rather there are sets of tools that people need to manage health information and take action based on it, and that together this suite of tools has a very different look and feel than our vision of a record, a notebook, or a binder. Right now when people hear the term health record, they think about binders or file folders. And so it’s unfortunate, frankly, that the term personal health record got so much uptake so quickly, because people do not truly understand what it means or the real potential of PHRs. A PHR is not a binder full of facts about me, it’s a set of tools that I may take up or put down that help me live better, and those tools draw from lots and lots of binders around the world. That might include my medical record in a hospital, it might be the tracking that I have at home about my menstrual cycle or my moods on days that I exercise. In essence Project HealthDesign has been working to illustrate how you separate the data from the application. And so the first thing I’d like people to be able to do is to leave with the idea that the PHR is not a monolithic enormous binder that people store stuff in, but a platform for action.

I would also consider the event a success if at least one of our teams went away with a strategy for wide-scale deployment of their application. Some of our teams have discrete products. Other teams are building rule sets that would be embedded in products, and they’re demonstrating how those rule sets work by creating mashed-together applications, like using iGoogle gadgets. We’re going to be bringing in the speakers from three of the major public data repositories, Microsoft's HealthVault, GoogleHealth and Dossia, and we hope that they will leave with the idea that what they’re doing is not only serving as stewards for data, but also as platforms for people to build action-focused health tools upon.

Most importantly, I want people to come to the event with questions about how health data drives health action, and how technology can drive health action. There is no one definition for personal health records, and if people come looking for that single vision, they may be disappointed. PHRs are about plurality.

Check back on Monday for more of our conversation with Patti Brennan. And for more information on the event, please visit the Project HealthDesign Web site.

About Patricia Flatley Brennan, R.N., Ph.D.
Patricia Flatley Brennan, R.N., Ph.D. is the Lillian L. Moehlman Bascom Professor, School of Nursing and College of Engineering, University of Wisconsin-Madison. Dr. Brennan received a Masters of Science in Nursing from the University of Pennsylvania and a Ph.D. in Industrial Engineering from the University of Wisconsin-Madison. Following seven years of clinical practice in critical care nursing and psychiatric nursing, Dr. Brennan held several academic positions. She developed the ComputerLink, an electronic network designed to reduce isolation and improve self-care among home care patients. Dr. Brennan currently directs HeartCare, a WWW-based tailored information and communication service that helps home-dwelling cardiac patients recover faster, and with fewer symptoms. Currently she focuses on the policy change and organizational re-design necessary to insure full value of community health informatics innovations. While president of the American Medical Informatics Association (2000-2002) she oversaw the development of the association’s strategic plan. Dr. Brennan serves on the leadership team of the NSF-funded Women in Science and Engineering Leadership Initiative at the University of Wisconsin-Madison. Dr. Brennan is fellow of the American Academy of Nursing (1991), a fellow of the American College of Medical Informatics (1993) and an elected member of the Institute of Medicine (2002).

More From Gary Cohen: Challenges Now, and Hopes for the Future

Yesterday's discussion with Gary Cohen introduced us to Health Care Without Harm and the recent achievements of the green hospital movement in the United States. Today, Cohen speaks about green health care internationally, outlines the challenges facing the green hospital movement, and offers his both short- and long-term predictions for the movement's future.

Health Care Without Harm is part of a global movement; what lessons do you think the US health care system can learn from the international community?
Right now we’re learning a lot from Europe. A typical Northern European hospital uses half as much energy as a typical US hospital. That’s a very significant issue, because as we are entering into a period of global climate crises and reducing reliance on fossil fuels for health care is a public health imperative (this sentence needs better structure). There are very direct links between a hospital’s energy sources and community health; we have evidence that shows if a hospital is reliant on coal fire power plants, there will be increases in asthma, respiratory problems and increased hospital visits. This also offers the opportunity to move to renewable sources of energy.

Another reason hospitals in Northern Europe are using less energy is because of hospital room ventilation. In a typical US hospital the ventilation duct is at the top of the room and pushes air into the hospital, into the patient room, and it circulates out and then it goes back up. So it actually circulates a lot of the germs, and it goes against gravity. In Europe, the intake of the ventilation of the room is at the sidewall level. And so the air comes up and then goes out the top. As a result, you need 30 percent less energy to run such a system. And now there’s research to evaluate whether this type of ventilation actually decreases infection rates in the hospital. Instead of recirculating the air and reinfecting people, the Northern European systems draw the air up and out the top. If changing the ventilation in hospital design reduces infection and reduces energy it is a big win both for patients and for the environment.

What are the biggest barriers and challenges facing the green hospital movement in the US?
The health care systems that have made the most comprehensive changes always have buy-in from the executive level. Once the CEO says that we’re going to make this change happen, then the rest of the system gets in alignment and people are given a mandate to implement change, whether it has to do with their built environment or their purchasing or their operations.

Where we don’t have that high-level buy-in, we might have a lot of champions, either nurses or facilities managers or environmental coordinators. Their efforts are critical, but they are swimming upstream, against the priorities of the system. And while those champions may be doing great things in their small corner of the hospital, it’s hard, though not impossible, to diffuse those changes system-wide. The Luminary Project of HCWH has seen the power of nurses as change agents and is telling the stories of nurses who are working to human health by addressing environmental health.

Cost analysis is another barrier. Where we’ve been able to showsome intervention saves money or is cost neutral, it’s been very easy to make the case for green solutions. The places where it’s very cost competitive is around reducing waste, reducing water use and reducing energy use. There are immediate positive financial impacts and environmental impacts with those kind of interventions. We’re also in the midst of developing a business case around sustainable health care building. We are seeing that there’s quite a small differential up front for some of the pilot hospitals, in the neighborhood of 1-2%. But because it’s going to save over time we’re now trying to measure how quickly that investment’s recouped.

The medical education system in the U.S. does not address the links between environmental exposures and disease or health impacts, and this continues to be a significant barrier for our work. A typical doctor may get four hours of environmental education in four years, and that will include issues around smoking and diet. And yet the science suggests that there are incredibly strong links between a very specific set of illnesses and diseases and very specific set of environmental exposures. The science is way ahead of the medical education, and that’s a real impediment to the transformation.

Conversations with Pioneers: Gary Cohen of Health Care Without Harm

Last month, we kicked off Conversations with Pioneers, a series of interviews with Pioneer grantees. The series continues this week with an interview with Gary Cohen (photo at left), executive director of Health Care Without Harm.

Health Care Without Harm hosted its annual conference, Clean Med, last month and Susan Promislo and Theresa Kanter both posted updates from the conference. Working to drive environmental sustainability in health care, Health Care Without Harm has been on the forefront of efforts to accelerate the development, use, and diffusion of environmentally preferable products and practices in the health care system.

Abbey Cofsky spoke with Cohen recently about the organization and its work:

Health Care Without Harm’s mission is to transform the health care sector --why have you chosen to focus your efforts on the health care industry?

We’ve chosen the health care industry for multiple reasons. Increasingly it’s clear that in order to prevent diseases in the general public, we need to understand the environmental links to those diseases and do whatever we can to reduce environmental exposures. And of all the sectors of society who should understand this growing science, it should be the health care sector --they’re in the healing business. And they have a responsibility to clean up their own house. We think that one very important objective for the 21st century is ensuring health care facilities operate with the least amount of environmental exposure as possible, and to move to a model of a high-performance healing environment – an environment that actually promotes healing, as opposed to contributing to further disease or exposure or infection.

The second important reason to focus on the health care sector is because it’s such a big part of the economy. Health care is 16 percent of the gross domestic product and quickly increasing as the baby boomers get older. Transforming the way that hospitals build, buy and operate their facilities will have a broad transformative effect on the economy. That’s really important, because we need our general economy to move away from oil and chemicals made from oil. We’re approaching the end of the petrochemical age, and we need the health care sector to be a leading force in ushering in a new economy that’s based on green materials, green chemistry and green energy to promote healing and sustainability on the planet.

The third big reason that we are focusing on health care is because our society trusts health care leaders. And so by having nurses and doctors and hospital leaders serve as leading advocates for the larger transformation we need in our society, they’ll be increasingly important social change agents.

How have hospitals begun to adopt environmental sustainable changes and what successes have you seen?

When we started Health Care Without Harm in the mid-‘90s there were over 4,000 medical waste incinerators in the country. And the Environmental Protection Agency was reporting that medical waste incinerators were the largest source of dioxin emissions in the country. Dioxin is probably the most dangerous human-made chemical with known links to cancer, neurological damage, immune suppression, reproductive problems, diabetes and a whole host of other problems. In the last 10 years almost all of those incinerators have been shut down -- there are probably less than a hundred medical incinerators left in America today. Many hospitals have reduced their waste generation significantly and moved towards safer treatment technologies for their waste, and they’ve saved money in the process.

Mercury is another great success today. When we started Health Care Without Harm, the health care sector was seen as responsible for 10 percent of all mercury air emissions and a significant contributor to mercury in wastewater. And that was because hospitals were dumping mercury fixatives down the drain. In the last 12 years or so, more than 5,000 hospitals in the country have started to move dramatically toward mercury elimination across the board. All the major pharmacy chains in the country have stopped selling mercury thermometers. The European Union recently banned mercury thermometers, and they’re looking to do the same on mercury blood pressure devices. We are now working with the World Health Organization and the United Nations to support a global ban on mercury-based medical products. This is an example that exemplifies how it starts with a simple effort. This mercury initiative began with a simple thermometer exchange and education day at Beth Israel Hospital in Boston. We paid for a couple of hundred digital thermometers, and told hospital administrators that they should be educating people around mercury. We gave them replacement thermometers to share with their staff and encouraged them to educate staff about the dangers of dumping mercury. From that moment, the initiative mushroomed and cities across the country started to ban mercury thermometers and started instituting their own exchange programs.

The role of a predictive model

Yesterday’s blog post focused on the value and future of comparative effectiveness analysis; today's second part of our interview with Lynn explores how the Archimedes predictive model has implications for comparative effectiveness research. You’ll remember that last October, Pioneer awarded an $15.6 million grant to Archimedes to support the development of ARCHeS, (ARChimedes Health care Simulator), an online interface and delivery system that will enable many more health experts to use the Archimedes model to answer health care questions with greater speed and precision.

How does ARCHeS and the Archimedes predictive model relate to comparative effectiveness research?

I see three major advances from Archimedes and its efforts to expand access to the model through the ARCHeS online delivery platform. First, more widespread use of the model will allow us, quickly and efficiently, to make confident, science-based predictions about treatment options. Archimedes founder David Eddy says it’s like building a house. If we can establish strong foundations at key knowledge points (e.g., through clinical trials), evidence-based predictive models can reliably fill in what hasn’t been studied directly.

Second, Archimedes can incorporate vastly more information—from physiology, systems biology, clinical studies and databases—about patients with complex, multiple conditions, and often on multiple treatment regimens, than even the best clinician can have in his or her mind and use well.

Third, Archimedes achieves a quantum advance in clinical care as a science. The leading-edge sciences, such as physics, start with careful experimental studies (like clinical trials in medicine) – and then use these results to build predictive models. They then use the models to predict observational data, and learn from how well these models work to design new experiments and develop better theories and models for prediction. The ultimate goal of other sciences is the ability to predict observed reality.

In the same way, accurate predictions of treatment options for patients should be the goal of clinical science. But clinical research is now focused mostly on perfecting and using the “randomized clinical trial” method, i.e., collecting careful experimental data. To move forward as a science, clinical research needs to use these understandings to develop useful predictive models that are tested and refined using large observational databases. Archimedes fast-forwards clinical care as science. And by using the new large EHR databases, it will put comparative effectiveness research on turbo.

We know Archimedes can provide reliable answers to a range of key health care and health policy questions – why is this area particularly important?

Expanding coverage for 47 million uninsured persons will soon be, we can hope, on the top of the national agenda. It will be important to be able to afford the expenses that come with that, particularly with forecasts of large deficits. Several of the leading health care proposals look to new “best practice” initiatives that will advance and – and apply – evidence-based health care to achieve economies. Effectiveness research is the foundation for evidence-based health care, although it will have to be supplemented by quality measures (identifying who provides effective care) and payment reforms.

What impact will the IOM’s recent recommendation to develop an independent entity dedicated to clinical effectiveness research and recent legislative proposals to set up a comparative effectiveness research body have on the future of this field?

The IOM and the new legislative proposals recognize that there must be broad political support for a national comparative effectiveness initiative, that this kind of initiative needs to address national priorities and to be generously funded, and that it is critical that comparative effectiveness research be first-rate science and guided by a trusted organization. The IOM report brings leadership and strong support from one of the most respected national health organizations. 

What else needs to happen now to continue to make comparative effectiveness research an accepted part of health care?

We need the clinical research community to enthusiastically adopt these new “rapid learning” approaches. This is starting to happen, for example, with the Cancer Biomedical Informatics Grid (CaBIG), a World Wide Web specifically designed for health research, that enables researchers to access and share very large amounts of data. We also see this with the Cancer Research Network – it creates a new “virtual research organization” among 10 of the nation’s HMOs with large electronic health records databases. We also need many more physicians and hospitals to adopt electronic health records and make rapid learning from tens of millions of patients annually an integral part of the healthcare system.

Lynn Etheredge on comparative effectiveness research

As Abbey Cofsky told us yesterday, a new feature begins today on Pioneering Ideas: interviews with selected Pioneer Portfolio grantees. We are talking with Lynn Etheredge (see photo at left), an independent consultant working on health care and social policy issues with a long track record in the fields of health finance and health reform (see his bio, below), about his work on comparative effectiveness research.

What is comparative effectiveness research?

Today, there are generally at least several treatment options for most health problems – and many more coming from the R&D pipeline. Comparative effectiveness research aims to identify the best treatment for each patient. Among the objectives of a national comparative effectiveness program would be to understand the best uses of medical technologies, as soon as possible after they are available, and to allow patients and physicians to make fully-informed choices for personalized health care.

Why is so much attention being given to comparative effectiveness research today? 

In the Washington health policy milieu, there is a growing concern about our country’s health spending —$2.3 trillion per year, the highest in the world, and with significant projected increases. This year, the federal government will pay over $650 billion for Medicare and Medicaid’s 85 million enrollees – and this spending is projected to be over $10 trillion in the coming decade.

Despite this high price tag, there are large variations in clinical care, a lot of uncertainty about best practices when it comes to treatments and technologies, and pervasive problems with the quality of care that people receive. In particular, the evidence base for medical care is weakest for the Medicare and Medicaid populations. This is largely due to the fact that seniors, pregnant women, children, persons with serious disabilities and patients with multiple chronic conditions are usually excluded from clinical trials.

These problems have been around for a while, but there are important recent developments that will allow rapid learning about new technologies soon after they are introduced, without requiring more pre-market entry testing that could slow medical progress. Among these tools are large electronic health record databases, with clinically rich, individual longitudinal data for millions of patients (over 8 million patients in the Kaiser-Permanente system, for example); radically more productive ways of organizing and using data by creating national research databases, such as the Human Genome Project (and its follow-on HapMap project and new Genome Wide Association Study database); and the potential of new predictive models, such as Archimedes.

Conversations with Today’s Pioneers in Health and Health Care

The programs and projects that Pioneer grantees are leading give all of us here at the Foundation a lot to think about. Their work presents us with new perspectives and new questions, and fosters many great discussions about the role of innovation in health and health care. Some of those discussions have been shared here on the Pioneering Ideas blog and we appreciate the opportunity to have such conversations with you about the work of our grantees, promising ideas for the future, and the importance of innovation in health.

While we all enjoy talking and writing about the work of our grantees, there is something special about hearing from them directly about what’s on their minds. To that end, we are beginning a new series of interviews with Pioneer grantees - putting them on the spot, asking important questions about their work and sharing those insights here on the blog.

We hope that you too will feel free to ask questions of these health and health care pioneers.

Our first grantee feature will be posted tomorrow; an interview with Lynn Etheredge, a health care consultant who is working with a team of researchers at the George Washington University on how to move the nation toward a rapid learning health care system, one that uses health data in more powerful ways to answer key questions and deliver evidence-based medicine to patients. Comparative effectiveness analysis is helping researchers assess which treatments and technologies work best and most cost-effectively for which populations, and it’s getting a lot of attention in health policy spheres. Check back tomorrow to see what Lynn has to say about rapid learning and comparative effectiveness research, and how these trends might spark dramatic improvements in the future of health and health care.