This was the provocative question posed to a five-person discussion panel at the 2012 Partnering for Cures conference last fall that included several thought leaders, including PatientsLikeMe’s own Sally Okun, RN, MMHS, who was recently promoted to the position of Vice President of Advocacy, Policy and Patient Safety.

“We have a small subset of people on PatientsLikeMe who have found us and who are gaining some expertise at being what might be called citizen scientists,” says Sally.  “But I think the important piece is that there are so many more people out there that we have to reach and help understand that there is access to so much more information than you are currently getting.  And social media is one way of doing that.”

Tune in below for Sally’s full comments and to hear what the other four panelists had to say about the growing use of social media in science.

What exactly is patient advocacy?
I like to think of it as actions by individuals, groups or organizations to support the interests and needs of patients across the healthcare system. Patient advocates can be family members or friends, professionals like nurses or social workers or non-professionals, including health coaches and navigators. They can also be nonprofit groups and grassroots activists. For me, patient advocacy is part of my being. It has grown out of my experiences as a nurse and as a family caregiver.

Creating the advocacy role at PatientsLikeMe is a formal step that highlights something we’ve done for years: amplify the voice of our patient members, especially among external groups such as health systems, government agencies and policymakers. We want to continue to drive industry and government to make more patient-centric decisions. It’s never been more important.   

What is your safety focus and how will it impact members?
Our safety focus to date has largely been on side effects experienced by patients when using drugs and medical products. These data are an important contribution to the understanding of how medications work in the real world, outside of the controlled environment of clinical trials.

We’re exploring how best to collect meaningful safety information that matters most to you and other patients, including information about medical devices and equipment, infections, falls in care facilities, and complications that may result from overtreatment. Sharing this information with our members and industry at large can support better decision-making and better outcomes.

Why is your role important to patients?
I have the unique opportunity to bring attention to a variety of topics and issues that our members are concerned about. For example, there have been many changes to the healthcare system as a result of the Affordable Care Act. Prominent among these is the concept called “patient-centered care,” which is being infused into all aspects of care, research and policy development.

My new role gives me access to meetings, discussions and conferences being held around the country and all over the world, focused on the nuts and bolts of putting patient-centered care into action. It is vital to have groups such as PatientsLikeMe present at these meetings. Our real-world perspective is essential if we are to move beyond buzzwords to programs and policies that really matter to you, our patients.

What don’t policymakers know about patients?
Probably the most frequently asked questions by policymakers, clinicians and researchers alike are related to patient engagement and patient activation, considered by many to be “the blockbuster drug of the century.” (see this Health Affairs  piece)  There’s evidence from research studies and demonstration projects that patients who are more engaged in their care and more activated to participate in their care have better outcomes – this can translate into better health for the patient at less cost.

This isn’t news to PatientsLikeMe or you, our members! In fact, our members, who tend to be more engaged and active in their own care, have reported benefits that include improved communication with their doctors, less hospitalizations, improved adherence to medications and better understanding of their condition. Now, that’s real evidence of the power of patients engaging with each other.

How can members be involved in what you do?
Over the past couple of months, I have had the opportunity to reach out to members through our Community Team on a couple of advocacy and policy projects. For example, we recently collaborated with one of our members with MS (LadyMac) for this conference. In the future, I hope to have a place on the website that allows for direct dialogue about current and future activities related to advocacy, policy and safety. It will also be a place where I will circle back with information after attending events, conferences and meetings.

What will the new user experience team do?
Our job is to make everything about the PatientsLikeMe experience more usable, useful, and compelling. We figure out what our members need, then sketch some ideas of what to build. We work with other PatientsLikeMe teams and our members and other patients to make sure we’ve got it right. When we all think it’s in good shape, we turn it into a design blueprint for our engineers.

Right now we’re designing some essential renovations, like cleaning up screen clutter, fixing search, and making it easier to find your way around. After that, we’ll be looking at ways to make data entry easier and smarter, designing for mobile devices, and eventually adding more content and functionality.

Why are you here at PatientsLikeMe?
Of all the products I’ve designed in the last 20 years, the ones related to health have always been my favorites. Making a great phone or a slick commercial website can be fun, but nothing is as inspiring as helping people live longer, healthier, or better lives.

PatientsLikeMe is even better than other healthcare work I’ve done, though. The whole company is driven by patient-centered values in a way I haven’t seen anywhere else. My job is to make sure those values are evident in what we deliver to our members.

How have you improved other products?
As a consultant, I once worked with a big online pharmacy that made people go through a bunch of unnecessary steps to fill a prescription. They saw an immediate drop in help desk emails after my team eliminated those steps and got rid of some jargon.

Whether it’s a glucose meter for Abbott or a website for Lexus, I’ve found the same approach works very well. Get the whole team focused on what users want to accomplish, how they think and feel about what they’re trying to do, and the language they naturally use, and it’s easier to come up with the right solutions.

What will you help PatientsLikeMe do differently?
PatientsLikeMe has always listened to members; the community team in particular makes sure the whole team is hearing member suggestions and concerns. The user experience team will be involving patients and caregivers even more closely in how we build products. We’ll also be talking to people who aren’t members yet, and to members we don’t hear from as much because they don’t hang out in the forums.

Before we design something new, we’ve started doing in-depth interviews with members and other patients, sometimes even in their homes. We’re not just looking at how people use our site. We’re trying to understand what it’s like to get diagnosed and live with different conditions, so we can help address the most important questions and challenges. We’ll keep doing more of that as we add new communities to the site.

We’ll be asking small groups of members to try things out and give us feedback before we launch any major changes. We’ll be testing designs with some non-members, too, because some updates will focus on making the site easier to learn when you first sign up. This should mean things go more smoothly when we roll out a site update. Of course, the community team will still be listening for any issues we don’t catch, and our engineers will be on duty to fix any bugs.

What do you hope to accomplish for members?
Of course I want to make some aspects of the site easier to use, but we’ll do much more than that. We’re thinking about how we can answer questions like what helps people sleep better, or how long they’re able to work with this condition, or how does stress affect certain symptoms.

We want to do a lot on the social aspects of the site, too. One thing we’ve heard consistently in patient interviews is that a “patient like me” isn’t just someone who shares my condition. It’s someone who also shares my life experiences and interests, like trying to stay employed or be a good parent when you have no stamina, or trying to find natural treatments that work.

How can members get involved?
We’ll soon start inviting a few members to help us test some ideas for simplifying the site navigation. Later on, we’ll have more invitations like that. We’ll be asking people to participate in interviews now and then. In the coming months, we’ll also be looking for a few members to get involved in a bigger way.

PatientsLikeMe Co-founder and President Ben Heywood says the appointments underscore the company’s “patients first” mission. “We’ve been committed to understanding and representing patient interests for years. With Kim and Sally in these roles, we’ll be in an even better position to keep patients at the forefront of all we do – from how we develop our website to how we represent patient interests at an industry and policy level.”

Kim Goodwin
In her role as VP of UX, Kim will evolve the information and structure on www.patientslikeme.com to help people live better lives with their conditions. She plans to expand member involvement in the website development process to improve usability and to make sure the website’s content answers their most important questions. She will also make it easier for members to find and connect with people who share not just the same condition, but the same values and experiences. Additionally, Kim and her new team will improve how researchers and providers conduct research and interact with members on the site.

Kim’s expertise in design has made her one of the most distinguished UX experts in the world. She is a frequent speaker and the author of the 2009 bestseller Designing for the Digital Age, which is heralded as the most comprehensive how-to guide in the field. Before joining PatientsLikeMe she was VP of Design and General Manager at California-based design firm Cooper. Over the years, Kim has also worked with clients including Lexus, Cardinal Health, Abbott, Medtronic Diabetes, Boeing, Cisco, and Best Buy. Her healthcare experience includes work for companies delivering diagnostic and treatment devices, consumer health education and tracking, and desktop and tablet-based electronic medical records.

Sally Okun
As VP of Advocacy, Policy and Patient Safety, Sally plays a vital role in ensuring the patient voice is heard, collected and disseminated to affect better treatment, services and care. As the company’s liaison with government and regulatory agencies, she will bring the patient voice to worldwide healthcare discussions and educate policy makers on the benefits of sharing health data. Previously, she developed the company’s drug safety and pharmacovigilance platform, which monitors patient data for potential adverse events. In this new role, Sally will continue to expand the website’s drug safety content and ensure the data collected about treatments and their impact become more transparent to the community at large.

Recently named a 2013 TEDMED speaker, Sally joined PatientsLikeMe in 2008 and led the team responsible for the website’s medical ontology and curation of patient-reported health data. She has since been a frequent speaker at policy workshops and forums and has contributed to peer reviewed publications and discussion papers for the Institute of Medicine (IOM) and others. She also co-authored a chapter for Health Informatics: An Interprofessional Approach, an upcoming Elsevier textbook. A registered nurse for over three decades, Sally’s clinical practice specialized in palliative and end-of-life care. In that time she also participated in numerous clinical, research, and educational initiatives of national significance.

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 is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us on our blog, on Twitter or via Facebook.

CAMBRIDGE, Mass. — Mar 13, 2013 — The U.S.-based patient network and real-time research platform PatientsLikeMe unveils its global clinical trials tool today at Europe’s Healthcare Innovation Expo 2013, hosted by the National Health Service (NHS). The free tool, unveiled today by Research Director Paul Wicks Ph.D., draws on open data to match patients from around the globe with clinical trials based on their condition and location. The U.S. prototype was launched last year and has already helped thousands of patients find suitable clinical trials.  The tool is available at http://www.patientslikeme.com/clinical_trials.

“Open data helps us accelerate the pace of research, and it’s crucial we do everything possible to match patients to trials that might advance treatment and help them live better with their condition,” says Wicks, a newly named TED Fellow and UK scientist. “We’re excited to be at this year’s Expo to learn what British and European healthcare innovation has in store for the NHS.”Last week, PatientsLikeMe Co-founder and Chairman Jamie Heywood spoke about innovative solutions to healthcare at the 2013 Nuffield Trust Health Policy Summit in London. Nuffield Trust is an independent source of evidence-based research and policy analysis for improving health care in the UK. Heywood returns to London tomorrow to speak on the Expo’s Masterclass Stage about the importance of measurement in building a learning health system.

In his Nuffield speech, Heywood called for a “revolution in measurement,” or what he calls “measurement-based medicine.” He adds, “We should measure the severity of each condition and its impact on the patient. The measurement should support the patient in life choices, clinicians in care choices and researchers in learning what’s effective. And every patient should be measured as part of the care process to the degree appropriate for the severity of their condition, so that their experience can be used to guide the next patient.”

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) 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 is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us on our blog, on Twitter or via Facebook.

PatientsLikeMe Is Building a Self-Learning Healthcare System
(Forbes)

Social Network Could Revolutionize Disease Treatment
(Wired)

PatientsLikeMe Leads Crowdsourcing for Patient Outcomes
(Fierce Biotech IT)

What the NHS Can Learn from Innovative Health Practices Abroad
(The Guardian)

Boehringer Partners with PatientsLikeMe on Rare Disease Community
(PMLive)

Networking Medicine: Patients Take a More Active Role in Science
(The Scientist)

PatientsLikeMe:  Crowdsourcing Healthcare
(AllVoices)

For more PatientsLikeMe media coverage, visit our Press page.

“We are excited to partner with Boehringer Ingelheim, a leading pharmaceutical company, to support this patient initiative,” says PatientsLikeMe Co-founder and President Ben Heywood. “Rare diseases are sometimes called ‘orphan diseases’ because they affect so few people, and don’t attract significant research attention or funding. Our website is where patients count. They’re contributing their real-world experience to help others living with IPF and advance research.”

According to the National Institutes of Health, pulmonary fibrosis is a disease in which deep lung tissue becomes scarred over time, making it harder for the lungs to move oxygen into the bloodstream. Cases where the cause of the disease is unknown are called IPF and usually affect middle-aged and older adults, in all an estimated 100,000 people in the United States.

“I’d been short of breath for sometime but put it down to an unhealthy lifestyle. My doctor explained the X- ray had shown I had ‘stiff’ lungs and that I should see a specialist,” says 61-year old Ian Bannister, who was diagnosed with IPF in March 2010 and received a lung transplant a year later. He adds, “When you get a diagnosis like IPF, the first thing you do is look on the Internet for information. I wanted to hear directly from people who were either living with it or who had managed to get transplants. PatientsLikeMe is a great idea and gives you direct access to people who are, or have been, in the same situation as you.”
People who have any form of pulmonary fibrosis, including IPF, can join PatientsLikeMe for free at http://www.patientslikeme.com/join/ipf.

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 is a trusted source for real-world disease information and a clinically robust resource that has published more than 30 peer-reviewed research studies . Visit us at www.patientslikeme.com or follow us via our blog , Twitter or Facebook .

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?

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.

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.

Can you really understand concepts such as health, mobility or well-being without measuring or comparing them?  See why Jamie argues that you can’t – and also why one’s “health span” may be more important than one’s “lifespan.”  Click the image below to tune in.

*After clicking the image above, select the “08:45” link to your left to start the presentation.