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PatientsLikeMe Project Pioneers Use of Outcomes Data That Are Meaningful To Patients

Feb 25, 2013, 12:33 PM, Posted by Pioneer Blog Team

Jamie Heywood Jamie Heywood
Paul Tarini Paul Tarini

RWJF has awarded PatientsLikeMe a $1.9 million grant to create the world’s first open-participation research platform to develop patient-centered health outcomes. The new platform will be linked with the PatientsLikeMe network to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways that matter to patients.

Jamie Heywood, co-founder of PatientsLikeMe, and Paul Tarini, senior program officer of the Pioneer Team at RWJF, share their views on why creating an open-access platform to develop measures that matter to patients could advance meaningful treatments that improve health and advance research.

Why is this a pioneering project?  What makes it novel? 

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Hack-a-Thon for "Unmentionable" Issues in Adolescent Health

Mar 13, 2012, 1:12 AM, Posted by Pioneer Blog Team

Calling all app developers! On March 31, ISIS, TechSoup and Health 2.0 are teaming up for a free, live hack-a-thon event in San Francisco to design apps to address youth health-related “unmentionable” activities, including dating violence, depression, sexually transmitted diseases and substance use. The event, sponsored by an RWJF grant, aims to create apps that will excite young people to share honest, real-time, private information about their taboo, embarrassing or “unmentionable” activities with researchers and program experts who work with youth.

The hack-a-thon will bring together developers, designers, innovators and entrepreneurs for rapid development of progressive concepts and prototypes to be developed by the participating teams following the event and at future hack-a-thons. ISIS and TechSoup will partner in the future development and distribution of the concepts and designs. The grand prize winner will be revealed at ISIS’ annual Sex::Tech conference and take home $1,000 cash.

Interested? Register now.

Health Games Research Profiled by Inside Healthcare IT

Feb 17, 2012, 12:26 AM, Posted by Pioneer Blog Team

The Pioneer Portfolio is committed to supporting trailblazers who are changing the way we think about health and health care.  Debra Lieberman, PhD, director of Health Games Research, a national program of Pioneer and headquartered at the University of California, Santa Barbara, is breaking ground by using health games to transform the way prevention, self-care, and health care are practiced.

The February 9 issue of Inside Healthcare IT profiles Lieberman’s research on how video games can be used to improve players’ health behaviors and health outcomes, and thereby reduce the cost of care.  After two decades of research on games that improve health behaviors in areas such as smoking prevention, diabetes self-management and asthma self-management, she has found that some games can have a dramatic impact on health.

“Video games can change people in fundamental ways that can lead to better health behaviors,” Lieberman said in the article. “Well-designed games can change people’s perceived risk for experiencing serious health problems, their sense of self-efficacy, or self-confidence, that they can carry out specific health behaviors successfully, and their perceptions of social norms. These and many other changes in people’s attitudes, emotions, understanding, and skills can tip the balance toward behavior change. While games can be fun and can teach health facts, they can do a great deal more to motivate and support better health.”

Check out the article to learn more about Lieberman’s research on health games and tell @pioneerrwjf or @gamesresearch what you think on Twitter.

Discovery Channel Documentary Highlights Project ECHO

Nov 23, 2011, 11:20 AM, Posted by Pioneer Blog Team

For some years now, health care innovators have been using emerging health information technologies to transform everyday clinical care. But Pioneer grantee Project ECHO applies these technologies in an entirely new and revolutionary way:  to spread medical knowledge throughout the health care workforce, and, in the process, form collaborative practices, build new professional skill sets and exponentially expand the capacity of the entire health care system.

Project leader Sanjeev Arora, MD, of the University of New Mexico Health Sciences Center, developed the ECHO model to break down medical “knowledge monopolies” so that doctors, nurses and other clinicians can deliver better care to more people who need it, right in their communities. Project ECHO uses video communications technology to create real-time virtual networks for sharing the best medical practices and knowledge between specialists at a university medical center and local primary care teams. 

A new Discovery Channel documentary, Health I.T.: Advancing Care, Empowering Patients, features ECHO amongst a handful of innovative efforts using technology to transform patient care. The segment tells the story of a primary care physician living in rural New Mexico who uses technology in a new way to address her patient’s condition. View the program online or watch it on the Discovery Channel this Saturday, November 26, at 8:00 a.m. ET.

For more information on Project ECHO:

Advancing the field of mHealth with mEvidence

Oct 7, 2011, 12:40 PM

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.