Pioneering Ideas

The Tip of the Iceberg for Science: Massive Biobank Starts Yielding Results

What do you get when you take 100,000 genotyped biological specimens and link them to longitudinal medical, environmental, behavioral and demographic data? You get Kaiser Permanente’s Research Program on Genes, Environment and Health (RPGEH), a Pioneer-supported effort that has developed the most robust and comprehensive research resource of its kind in the world.

At an unprecedented pace, researchers from the RPGEH biobank at Kaiser Permanente, in collaboration with colleagues at the University of California, San Francisco Institute for Human Genetics, have collected 170,000 samples and genotyped over 100,000 of them in just over a year. While currently the largest biobank in the United States, the ultimate goal is even more impressive: to collect data from a half million members of the Kaiser Permanente health plan linked to their electronic health records and population surveys – creating the largest, most comprehensive biobank on the planet.

Early research findings generated from the RPGEH data were presented this month at the joint annual meeting of the American Society of Human Genetics and the International Conference on Human Genetics in Montreal and are featured in the November issue of Nature Medicine. From an investigation of prostate cancer among African American men to a multi-ethnic study on bipolar disorder to a pharmacogenetic study of response to metformin, a drug used to treat type-2 diabetes, the RPGEH biobank is already starting to deliver.

But this is just the beginning - experts say that the possibilities for studying genetic and environmental influences over time thanks to this project are endless, with enormous potential for accelerating both the pace and breadth of medical research. The implications not only for the science community, but also for public health leaders and patients, are immeasurable. Stay tuned.

Exploring What We Don’t Know at TEDMED 2011



Pioneer is proud to once again sponsor TEDMED, which brings together innovative thinkers and leaders across the fields of medicine, science, business and technology. Traditionally, when people attend TEDMED, they come looking for ideas and inspiration. This year from October 25-28, the Pioneer team will be looking at things from a different perspective: What don't we know about some of the greatest challenges facing health and health care.

TEDMED has identified a tentative set of Twenty Great Challenges of Health and Medicine—deeply rooted problems with multiple, interconnected causes and ripple effects—which they plan to include as part of their 2012 conference. We’ve offered to help TEDMED examine these issues and we believe a good first step is to take a step back and ask: What don’t we know about these problems? What relationships aren’t we seeing?

To do this, we’ll be engaging all 600 conference attendees to get their thoughts on “what don’t we know” about these 20 challenges. Looking closely at what we don't know will help create a big-picture understanding of these challenges—a crucial step to developing truly effective solutions.

We invite you to join us in this exploration. Take a look at TEDMED’s Twenty Great Challenges of Health and Medicine. Then, answer the question, "What don’t we know?" about any of these challenges by tweeting #TEDMEDchallenges, posting a comment below, or e-mailing us at pioneerblog@rwjf.org.

Afterwards, we’ll be compiling what we heard at the conference and what you’ve told us to help TEDMED shape their new Great Challenges Program. Your input is valuable and will directly inform what is done at the TEDMED 2012 conference. We’ll share what we’ve learned in future posts.

How can you share your ideas?

• Tweet #TEDMEDchallenges to tell us what don’t we know about TEDMED’s Twenty Great Challenges of Health and Medicine. Tweet about any or all of the issues. 
• Post a comment below. 
• Follow @pioneerrwjf and #TEDMEDchallenges to see what others are saying.

Be sure to check back throughout the week and next for updates from our guests and team members.

Early Insights from Project HealthDesign

As more patients begin using technology to manage their health, the Pioneer Portfolio's National program Project HealthDesign is helping meet the demand by designing tools that can be used by real people to improve their health and engagement with their health care providers. In the true pioneering spirit, Project HealthDesign research teams are working with real patients to create new technologies that help people living with chronic illnesses and improve their health and coordination of care. Patients are tracking observations of daily living (ODLs) about their sleep patterns, pain levels and moods. They use the resulting ODL data to better communicate with health care providers as they look to see what the trends in their ODLs might suggest, like whether they need to take a certain action to improve their health or whether past actions have made a difference. The incredible experiences these teams are having with real patients and clinicians have uncovered some preliminary lessons.

The teams have learned that new clinical workflows are needed in order to incorporate ODLs into clinical practice. Nurses, health coaches and other caregivers have emerged as the key points of contact for ODL data incorporation. And because each patient is different, personal health applications need to be customizable.

A key outcome of the teams’ work will be to determine how ODLs can be integrated into clinical care and individuals’ daily health decision-making processes. To learn more insights and lessons from Project HealthDesign, view the Early Findings and Challenges report for a quick overview or read the draft Technical Architectures and Implementations report for more detailed findings.

Warm Weather Brings Risk of Resistant Hospital Infections

Two new articles from Extending the Cure, a Pioneer-supported project that examines solutions to the growing problem of antibiotic resistance, advance our understanding of the growth and spread of certain lethal hospital infections and pose policies to address the long-term challenge of antibacterial resistance.

The first article, which appeared Sept. 26 in the online journal PLoS One, describes a new study that found certain potentially lethal hospital infections are more prevalent in warmer weather. In the study researchers examined 211,697 infections reported by 132 hospitals across the nation from 1999 to 2006. The warmer the temperature, the more hospitals reported certain hard-to-treat infections. The problem was particularly severe in the summer: For example, the researchers identified a 52 percent summer spike in bloodstream infections caused by Acinetobacter baumannii, a highly resistant “superbug.”

Hospitals should be on alert during warm weather in any season in order to identify and stop the spread of these resistant infections, the authors say.

In the second article Ramanan Laxminarayan, the director of Extending the Cure at the Center for Disease Dynamics, Economics & Policy, and John H. Powers, associate clinical professor of medicine at George Washington University School of Medicine, argues that we need incentives to crank out newer, more powerful antibiotics and at the same time, preserve the efficacy of antibiotics we have left.

Writing in October issue of the journal Nature, they say that we must start treating antibiotics as a valuable resource, one that can be depleted with overuse and nurtured with public private partnerships(PPPs).  “In our view, government intervention through PPPs that are focused on the development of antibacterials with desirable properties, in combination with incentives to encourage the conservation of antibacterials and the achievement of resistance targets, is the best way to tackle the increasingly serious public health threat of antibacterial resistance.”

Leave a comment to tell us what you think public policy should focus on in the research, development and preservation of antibiotics.

Decisions, Decisions…Behavioral Economics and Behavioral Change

To improve people’s health, we ask them to change their behavior. Quit Smoking. Eat right. Lose Weight. Take a walk. Get your blood pressure checked. See a doctor. But, as many have noted, making a commitment to do the “right” thing is often easier than following through on that commitment.  In fact, many of the nation’s health epidemics are linked to people doing the “wrong” thing despite their best intentions.  Assuming that people want to feel good and live healthy, productive lives, how can we explain actions that unequivocally threaten that outcome?  As a classically trained economist, I am sorry to say: Classical economics can’t give us an answer to that question.  Wearing the hat of program officer with the Robert Wood Johnson Foundation’s Pioneer Portfolio, I’m charged with searching, often in unexpected places, for pioneering ideas that have the potential to accelerate change and radically improve our health and the health care we receive. This quest has led the Pioneer Portfolio to the doorstep of behavioral economics.

Unlike classical economics, which assumes people act rationally and make choices in their best interest, behavioral economics does not assume that people behave in ways that maximize their income or long term happiness and wellbeing.   Rather, behavioral economist study how various factors such as environment and psychology lead people to sub-optimal outcomes. Pioneer is seeking ideas from this field because we understand that, in addition to the social determinants of health that we cannot individually control, we are constantly making conscious and unconscious decisions that relate directly and indirectly to our health. We choose whether or not to take our medication. We select the foods we eat. We decide whether to take the stairs or go to the gym.  

When we interact with the health care system, our health care providers make decisions that impact our understanding of our health condition and our treatment protocol. Doctors decide whether to use positive reinforcement or fear tactics to motivate a patient, encourage her to stop smoking, or ask her to get a test. Nurses choose whether to speak up during rounds and how to impart knowledge to a patient when he is discharged from the hospital.  Insurers seek to influence our decisions with financial incentives related to choice of physician, care facility and frequency of interaction with the health system. The frequency of these decisions is important because when we – or our providers – make poor decisions, our chances for a long, healthy life are hurt.

The emerging field of behavioral economics is working to discover how people make decisions that can affect their health behaviors and health care, and how we can learn to guide people toward decisions that are in their best interest, even if they are hard, inconvenient or easy to forget. With this knowledge, policymakers and others can design environments, campaigns, messages and tools that make it easier for people to choose what is best for themselves, their families and their communities.

That’s why the Robert Wood Johnson Foundation’s Pioneer Portfolio has issued a call for proposals to identify promising experiments that apply the principles and methods of behavioral economics and choice theory to perplexing health and health care problems. By tapping into the behavioral economics community, we hope to uncover pioneering interventions and policies that will transform the way patients and providers make decisions that affect health for ourselves and our communities.

It is our hope that behavioral economists can help us learn how people think about their health and the decisions they make. Some research we fund will fail, but that’s okay–there will be critical lessons learned from these experiments. The successes and the failures will help to educate our work to transform health and health care for the better.

We’re seeking innovative ideas that apply the field’s principles and theories to perplexing health problems. We are particularly interested in supporting either experiments or secondary data analyses that test innovative solutions to the challenges of obesity and consumer engagement, but any problem can be addressed.

Do you have an idea of how behavioral economics can help change health and health care? Can you think of a health problem that can be transformed by learning more about how patients and providers make decisions about the care they give and receive? If you don’t plan to submit a proposal, leave a comment– I’d love to hear your pioneering ideas.

Register here for an informational web conference on October 19 at 11:00 a.m. Eastern. The Robert Wood Johnson Foundation will discuss and answer programmatic questions about Pioneer's new funding initiative, Applying Behavioral Economics to Perplexing Problems.

Advancing the field of mHealth with mEvidence

In August, Pioneer's Al Shar shared his takeaways from the 2011 mHealth Evidence Workshop that we sponsored along with NIH, NSF and the McKesson Foundation. In that post, Al mentioned that the participants were eagerly putting together a statement of direction and would soon publish the key outcomes of the meeting.

We are pleased to report that the group has since shared those thoughts, which we have included below. Additionally, we encourage you to watch the archived webcast of the event.

Let us know how you think the mHealth ecosystem can be strengthened to deliver transformational improvements in the research and practice of health and well-being.

National and global scientists, policymakers, health professionals, technologists, and representatives from regulatory and funding agencies gathered for the invited mHealth Evidence Workshop at the National Institutes of Health August 2011 to discuss and identify more effective methods to generate evidence of efficacy and effectiveness for the unique emerging science of mobile health (mHealth).  mHealth draws from medical and clinical research, behavioral theory, user interface design, sensing technology, computer science and statistical inference to improve health outcomes. The meeting was sponsored by the Pioneer Portfolio of the Robert Wood Johnson Foundation, the McKesson Foundation, the Office of Behavioral and Social Sciences and National Heart, Lung and Blood Institute at the National Institutes of Health, and the National Science Foundation. The overall conclusion of workshop participants was that mHealth has great potential to support health and well-being worldwide, and, therefore, there is a need to enhance its scientific foundation. mHealth tools and interventions must be backed up by rigorous scientific development, evaluation, and evidence generation to enhance meaningful innovation and best practices, and to validate tools and methods for health professionals, consumers, payers, governments, and industry.

Meeting participants also concluded that the science of mHealth must use and further develop systematic research methods adapted to the technology, clinical or program intervention, in addition to analytic methods to process the vast amounts of streaming, tagged, complex and layered data that becomes available using mHealth technologies. 

This spectrum of methods will need to include not only randomized clinical trials, potentially optimized to leverage mHealth advancements, but also alternative study designs and methodologies that  ensure that research studies are able to provide timely information within a rapidly evolving field.  Evaluation methods that incorporate principles of existing study methodologies, including randomization, step-wedge design, n-of-1 trials, and Practice-Based-Evidence (PBE) methodology were discussed, in addition to methods that borrow from engineering, including Multiphase Optimization Strategy (MOST) and Sequential, Multiple Assignment  Randomized Trials (SMART).  Ethical issues related to collection, storage and use of real-time masses of identifiable personal data were also acknowledged as topics requiring updated guidance.

As a follow up to the workshop, participants are identifying and developing the methods needed to best generate mHealth evidence. They are forming working groups to engage the mHealth community in developing a research agenda centered on design methodology, analytic methods, and mHealth technologies. These efforts will support a rigorous and innovative mHealth ecosystem with promise to deliver transformational improvements in the research and practice of health and well-being.