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

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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.

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3 thoughts on “Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini”

  1. I find it encouraging that RWJF has awarded this grant to PatientsLikeMe to help in developing “patient-centered health outcomes”. I’ve been abundantly blessed with two EXCELLENT epileptologists at the UTHSC in San Antonio that have treated me through the VA for over the last 20 plus years. They have both taken excellent care of me. One of the things that caught my attention right away, was that they both obviously care about their patients. They actually “chat” with me. Besides my health, they care about how my family is doing, how the kids are handling school, how family and friends deal with my seizures, etc. They’ve had me bring family members to my appointments and give them information I am unable to provide. They are down-to-earth, and listen, even if I’m repetitive, can’t think of how/what I want to say – results of my left temporal lobe complex-partial seizures. They don’t speak “above” me, but to me and my capability to understand. They obviously have to be “technical” to a degree, but they explain things in everyday actual conversation that my family and I can understand. Both doctors have even “used” me – in a good way – to share the story of my journey with epilepsy to various groups while doing live EEGs on me to show to drug company reps, medical students, the media, and others. It has been such a blessing to know that I could help in this way, and I will always be grateful to my doctors for that. The help from RWJF and the efforts of PatientsLikeMe, will have a far reaching positive effect on patient-doctor relationship, and sharing of information that will speed up research. Thank you.

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