13 posts from February, 2013

Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini

Posted February 25th, 2013 by

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.

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

PT: We see this as an opportunity to help improve the use of real-world data. As we look at the potential power of this data, we are concerned about how hard it is to move it out of the real world and into more formal settings where it can be applied.  Traditionally, data drawn from the day-to-day experiences of people living with disease have been viewed with real suspicion by those working in more formal settings, such as medical practice and research. So the possibility of developing a way to structure data from the real world and validate it solved a number of those problems. Also, the fact that PatientsLikeMe was willing to largely open-source the creation and availability of the outcome measures that would get produced was a very important public good the Foundation wanted to pursue.

JH: We have been thinking for a long time about how we can really shift the way health care operates into a new paradigm – a “learning health system model” that continuously measures and improves. PatientsLikeMe is helping to build this model by developing a set of integrated measures that characterize the real world state of each patient. What is novel about patient-reported outcomes is we are harnessing the best ideas for measuring each condition through a crowd-sourcing, open-source approach. This will dramatically accelerate our understanding of human health. If we can create a shared partnership with patients and researchers, it will break down a lot of silos, barriers and cost inefficiencies so we can improve and increasingly use outcome measures as a de-facto practice.  Physicist Lord William Kelvin famously said “to measure is to know.” Today we use outcome measures to understand what we practice, not to determine what we should practice. That is backwards. We want to reverse the system so that the outcome becomes the measure of medicine. If we can develop a measurement system that is openly shared and centered on the patient, we will move our knowledge forward and bring medicine to a new and important level.

How will patient-reported outcomes fill the vacuum of “measurement in medicine”?

PT: This is a critical point. We need health outcome measures that hold meaning for patients in contrast to those that are developed by providers or researchers to help them do their jobs. We have seen time and time again that there is not a perfect overlap between the interest of providers, patients, or researchers.  If patients start driving and defining what outcomes are most important to pursue, then we believe we will see some real potential for changes in clinical protocols and research agendas, which could lead to dramatic improvement in health outcomes.

JH:  Like all complex problems, there’s no simple answer to this question. Many measurements are copyrighted, expensive and unavailable for clinical use, or they’re not designed to be meaningful and useful for patients. You can find some instances where measures are used effectively overall but in general they are not part of healthcare. The ability for crowd sourcing to iterate toward measuring what is meaningful and to empower patients with those tools dramatically increases the odds that these measures will be relevant and efficient, and that they’ll be used.

What is exciting and transformative about a project that leverages data in real-world, real-time?

PT: Anybody who is living with a disease spends most of their time living with it in the real world.  They only spend a very small amount of time in a provider setting, yet most of the information we collect traditionally on the status of disease is always collected in those provider settings.  That is such a limited view of what someone is experiencing and how it is affecting their lives. So to be able to get a fuller, richer picture of somebody’s total experience with their particular disease – not just the limited window when they are in a provider’s office – is where new understanding and new knowledge and treatment priorities can emerge.

JH:  My brother Stephen died of ALS (Lou Gehrig’s Disease) when he was 36. When I look back and wonder what might have changed that, and when I think about the tens of thousands of patients who have gone though ALS and tried so many different things to improve their lives, I think of all the knowledge that was lost because the system did not measure or learn. I feel a very keen sense that we continue to throw away information and insights that might lead to new knowledge, and certainly better care.  That experience has made me determined to work toward a world where the next patient who is diagnosed with a disease can make informed choices based on the actual, quantified experience of every patient who has gone before them, and with the best insights of every clinician. Imagine trying to manage your credit cards and bank statements without knowing your balance, or by having to guess the value of each transaction. You would have no idea how to manage your finances. Yet, that’s how we run health care, because we have few meaningful outcomes.

Should patients be excited about this?

PT:  If this is done right–and the measures that get developed are measures that are meaningful to patients–this will give them a way to collect and report on their own experience, which is an important first step. As people begin to do that, patients will begin to see it will change the dynamic they have with their providers. It changes the power of their information and puts them on more equal footing. I also believe there is an altruistic streak that runs through all of us. The opportunity to contribute your information to a larger knowledge enterprise to make it better for others is a pretty powerful motivator for a lot of people.

JH:   We are combining several levels of crowd learning into one integrated system. The PatientsLikeMe system allows for individuals to contribute structured, quantitative knowledge into one model. But what is being added are two powerful new tools.  The first is the ability for patients and researchers to collaborate in the authoring and evolution of the tools.  The second is a real-time feedback mechanism that reviews each instrument for its utility, relevance to the patient, and context. Having a feedback loop so patients can comment and impact the design, coupled with the ability to immediately and rapidly generate significant amounts of quantitative data, is revolutionary. The validity of outcome measures is ultimately driven by their utility to patients, which is a very different concept from the way things work now. This is a disruptive shift.

Why is it important for a foundation to engage in these kinds of relationships at this time?

PT:  The fact that PatientsLikeMe is a for-profit didn’t figure into our analysis on the project’s worth.  The Foundation made its decision based on the merits of what they were proposing and the potential it afforded. For us, the issue is not ‘oh let’s go fund a for-profit’; rather, the issue is whether this is an idea worth funding.

JH: Health care, whether for-profit or nonprofit, is full of silos that prevent the flow of data and information largely to defend existing profit centers. This harms the system and the patient. There are a lot of technologies being developed now that will likely disrupt these silos. The Robert Wood Johnson Foundation deserves a lot of credit for engaging in a dialogue with us and many others to disrupt traditional ways of doing things in health care.  They are looking at these developments in a very strategic and important way to make sure the system is inherently open. What distinguishes PatientsLikeMe is that it is fundamentally voluntary. If we are to succeed, we have to deliver on our commitment to patients to advance understanding of their disease and contribute to the research process. Information networking in health care today is like the beginning of the Internet. It is a great public good that RWJF is thoughtfully working to ensure that this fast-developing network is structured in ways that improve the human condition.


Posted February 25th, 2013 by

Real-time health learning system will generate health outcome measures that are meaningful to patients and align medical research with patient needs

February 25, 2013—Long Beach, CA—PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome measures. The platform is part of a new open-science initiative that puts patients at the center of clinical research process and will allow researchers to pilot, deploy, share, and validate new ways to measure diseases. An “idea worth spreading,” the initiative will be spotlighted today in a presentation at TED2013 by Paul Wicks, Ph.D., PatientsLikeMe’s Research Director and a new TED Fellow.

Health outcome measures are typically developed by clinicians and researchers, and collect information that meet their needs. Linked with the PatientsLikeMe patient network, the new platform will 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.

“This project is really exciting for us because it focuses on data that is developed by patients in the real world, where they spend most of their time, as opposed to controlled clinical settings,” says Brian Quinn, team director of RWJF’s Pioneer Portfolio, the team funding this project. “We believe it has the potential to help researchers better understand the course of disease and open up important paths for the development of new therapies. We’re eager to see what medical revelations will emerge when researchers focus first on patients’ needs and concerns, and openly collaborate with patients and each other.”

PatientsLikeMe is an established network for patients who want to monitor their health, improve their outcomes, and contribute to medical research and discovery. Nearly 200,000 patients, representing more than 1,500 diseases, have created longitudinal records centered around their health outcomes.

Using the platform, researchers will quickly attract PatientsLikeMe members to their studies, track the progress of newly developed measurements, and export data for analysis. Patients will be able to offer their rapid feedback to ensure that measures are relevant to their experience of disease.

In this open-participation research initiative, access to the new platform will be free, and all instruments and items developed on the platform will be made openly available for free, unlimited use and further development with no commercial restrictions. PatientsLikeMe is also contributing the dozens of existing instruments they have developed. Charitable users will receive discounted access to data compiled by PatientsLikeMe for the initiative.

“Measurement is the basis of knowledge. For too long, there have been restrictions placed by copyright and weak and out-of-date tools to measure a patient’s experience with disease,” says Jamie Heywood, co-founder and chairman of PatientsLikeMe. “Patients, researchers, and clinicians working together to iterate and learn about the holistic journey of each condition and health itself is a critical step toward transforming care and discovery so that they truly serve the patient.”

A beta version of the platform will be unveiled in the coming months.

For more information about the initiative, visit: http://rwjf.org/en/grants/grantees/PatientsLikeMe.html

Professional organizations, patient-reported outcome specialists, funders, academic researchers, and others interested in participating in the initiative are welcome to email openscience@patientslikeme.com.

To join PatientsLikeMe, visit: http://plmjoin.com/openscience.

About Robert Wood Johnson Foundation

The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation’s largest philanthropy devoted exclusively to health and health care, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, measurable, and timely change. For 40 years the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. When it comes to helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in your lifetime. For more information, visit www.rwjf.org. Follow the Foundation on Twitter www.rwjf.org/twitter or Facebook www.rwjf.org/facebook.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.