Company Names Scientific Advisory Board for World’s First
Open-Participation Research Platform for Patient-Centered Health Outcome Measures
CAMBRIDGE, Mass.— May 20, 2013—Today, PatientsLikeMe announces an open call for medical researchers to be among the first pilot users of its Open Research Exchange™ (ORE) platform (www.openresearchexchange.com). ORE puts patients at the center of the clinical research process and allows researchers to pilot, deploy, share, and validate new ways to measure diseases within PatientsLikeMe’s community of more than 200,000 members. The new platform and call for participation is being spotlighted today at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference in New Orleans.
Supported by funding from the Robert Wood Johnson Foundation, PatientsLikeMe’s ORE is available for free to any researcher who wants to:
Leverage new, specialized tools to quickly design and field measures based on patient questionnaires;
Rapidly test new measures with real patients in multiple iterations, and get feedback on their instrument development;
Be among the first to browse and contribute to the world’s only open library of patient-reported instruments and health measurements.
PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. says, “We’re excited to move to the next phase of this important project, and to create an open environment where people who are interested in advancing medicine can easily collaborate on health outcome measures.”
The company has also named an ORE Scientific Advisory Board, a group Wicks says will lend scientific, academic, industry, and patient expertise as the platform develops. The board will also recommend and introduce participants to additional technologies and partners to accelerate their work. “Our board includes some of the most renowned and respected minds in scientific research. Together, they bring the academic experience, clinical perspectives, and patient focus that will be so instrumental to ORE’s users.”
Scientific Advisory Board members, whose full profiles can be found here, are:
Ethan Basch, M.D. of the University of North Carolina School of Medicine, Lineberger Comprehensive Cancer Center;
Patricia Brennan, R.N., Ph.D., of the University of Wisconsin-Madison School of Nursing and College of Engineering;
David Cella, Ph.D. of Northwestern University’s Feinberg School of Medicine, Department of Medical Social Sciences;
Ari Gnanasakthy, Head of Patient Reported Outcomes at Novartis;
Hugh Hempel, Co-Founder, Solution Therapeutics and Parent Advocist and Founder of The Addi and Cassi Fund;
Erin Holve, Ph.D., Senior Director of AcademyHealth;
Bryce Reeve, Ph.D., of University of North Carolina’s Gillings School of Global Public Health;
Sara Riggare, Ph.D.student at the Karolinska Institutet;
Sharon Terry, President and CEO of Genetic Alliance;
John Wilbanks, Chief Commons Officer at Sage Bionetworks and Founder of Consent to Research.
Dr. Basch says that PatientsLikeMe has fundamentally changed the landscape around patient self-reporting by proving that people “are willing and able to volunteer information that can be aggregated to provide valuable safety and effectiveness data. The opportunity for new questionnaires to be tested through online communities is exciting and novel, and is an example of investigator-patient partnering that can increase the efficiency and person-centeredness of research.”
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 via our blog, Twitter or Facebook. 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.
Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement
CAMBRIDGE, Mass. — — 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.
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.”
It’s been a busy couple of weeks at PatientsLikeMe. Here are a few media highlights showcasing all the exciting things that are going on, from new partnerships with Aetna and Boehringer to the major grant we were awarded by the Robert Wood Johnson Foundation to TED2013 Fellow Paul Wicks’ presentation at TED2013 last week.
We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time. Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.
But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.
In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)
One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.
Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!
p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative. Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.
With more than 500 attendees from 36 countries, the 5th Annual Medicine 2.0 World Congress took place September 15-16th at Harvard Medical School here in Boston. Among these attendees were several PatientsLikeMe leaders, including keynote speaker Jamie Heywood and conference presenters Sally Okun and Paul Wicks.
In an unusual twist, all three PatientsLikeMe speakers got to present back-to-back, starting with Co-Founder and Chairman Jamie Heywood’s opening keynote about how his brother Stephen’s experience with ALS shaped his understanding of basic concepts like health, well-being and disease. He then shared how PatientsLikeMe was founded to help patients like Stephen record and share their symptom and treatment data in a way that is meaningful to them, other patients and researchers. “Human networks are connecting information and data in ways that have never before existed,” he told the crowd.
Next to speak was Dr. Paul Wicks, our Research & Development Director, who gave a presentation entitled “But Will It Scale? Lessons in Growth from PatientsLikeMe.” He discussed how PatientsLikeMe evolved from a data-sharing platform for patients with a single disease – ALS – to a general platform serving more than 160,000 patients with more than 1,300 health conditions and a myriad of symptoms. Important lessons covered included streamlining the research processes, refining the medical ontology and adjusting the business model.
Finally, PatientsLikeMe Health Data Integrity Manager Sally Okun – whose talk was entitled “Patient Voices: The Power of Shared Knowledge” – then looked at some of the challenges of turning individual stories into shared knowledge. One of the biggest hurdles: how do you capture the patient experience in clinical terms, given that patients don’t speak this way? For example, instead of talking about a “gait disturbance,” patients might report that they are stumbling, limping, dragging a foot or “walking like a drunk.” (In fact, Sally shared that PatientsLikeMe members have used 35 different terms for this one clinical concept.)
What was the reaction to this trio of talks? Sally reports, “I think the juxtaposition of Jamie, Paul and me speaking was quite effective. Our commitment to capturing and honoring the patient voice certainly resonated with the people I spoke with.” Another way to gauge the response – and certainly an apropos one given the conference’s focus on social media – is to examine the Twitter activity generated by these presentations. Here are a few of the 7,000+ (!) Tweets associated with the conference hashtag #med2 that gave shout outs to PatientsLikeMe:
At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood test to tell you exactly how patients are doing, the main outcome measure used to record how PALS are doing is an instrument called the ALS Functional Rating Scale – Revised (ALSFRS-R).
It’s a short, 12-item questionnaire that is the “gold standard” tool for clinical trials, but it has one important caveat: it’s normally only completed by clinicians (doctors, nurses, research assistants, etc.). When PALS take part in clinical research studies the questions are read out loud to them and patients are not normally allowed to see their ALSFRS-R scores. When we launched PatientsLikeMe, the concept that we would give patients their very own copy of the ALSFRS-R scale and let PALS see their scores was controversial, and although we’ve gone on to publish a number of studies using the ALSFRS-R and even expanded it for highly impaired patients, the question has always remained: is a patient’s self report of their own ALSFRS-R scores “valid”? In other words, if a patient scored her walking as “3 out of 4” on the scale, would her clinician rate it the same?
Fortunately, our research partners at the Charité Hospital in Berlin, Germany, wanted to know the answer to this too! They’ve been piloting an exciting new project to encourage patients to share progress reports on their ALS with their doctors electronically, using the Internet and other tools including the ALSFRS-R. To support this, they conducted a study where 127 ALS patients were invited to rate their severity of illness over the web, and then were invited to clinic to have their ALSFRS-R score rated in the traditional way by a trained nurse.
As the chart above shows, the results were unequivocal: “Agreement between both data-capture methods was very high…there was no systematic directional bias to any differences…more than 95% of all pairs of measurement were within the limits of agreement.” Even better, 95% of patients found there was no significant time burden, nor physical or emotional strain from completing such reports over time.
So far this all might seem rather academic, so why is this important? As the authors go on to say, “Completing patient-reported outcomes online could be a way to complement face-to-face visits and manage care in a more personalized and needs-based way, rather than relying upon regular time-intervals such as three- or six-month follow-up appointments. Online patient-reported outcomes could also be used to improve the convenience and thereby participation in clinical trials that use the ALSFRS-R as an endpoint.”
(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.)
But when it comes to clinical trials, can we afford to let it be?
“Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant computer geeks hacking into secure private networks to fulfill their own curiosity or liberate secret knowledge. Today, voluntary “data liberation,” as practiced by governments and corporations, is relatively commonplace and semiorganized groups with data freedom agendas, such as Wikileaks and Anonymous, have entered the mainstream consciousness.
For me, it feels increasingly challenging to delineate the margins where free data is good or bad. A highly networked, mobile-enabled popular uprising is considered a “revolution” when it’s against an oppressive regime, but considered a “menace” when it is a disenfranchised mob rioting in a western democracy. Bravely recorded videos of civilians attacked by autocratic regime military forces are essential in prosecuting crimes against humanity, but videos leaked from within a democratic military are a “threat to national security.” So while data itself may want to be free, we don’t always want it to be. And so, to clinical trials.
From a societal perspective, the requirement for any trials conducted in the USA to register on ClinicalTrials.gov can only be a good thing in preventing past sins, such as suppressing negative trials or changing end points. As the US government makes this data open, it also allows repurposing. For instance, PatientsLikeMe imports the complete dataset from ClinicalTrials.gov every night to let our membership know (free of charge) about the 30,000+ active trials for which they may be eligible. So far, so good. But what if even more clinical trial data were free?
The holidays are a time for thinking about everything you hope and wish for in the coming year. They’re also a time for appreciating everything you already have. As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team.
“I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” –Ben Heywood, President and Co-Founder
“I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director
“I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of BusinessDevelopment
“My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer
“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder
In August, we proudly announced that our Research & Development Director, Dr. Paul Wicks, PhD, had been named “Humanitarian of the Year” and a TR35 Honoree by MIT Technology Reviewmagazine.This week, he received both awards at MIT’s annual Emtech event, a two-day conference focused on emerging technologies held at MIT’s Boston campus.
Below are links to a few videos highlights from the event, including the award presentation on Tuesday night. As you’ll hear in the organizer’s introduction, the criteria for TR35 (the best young innovators under the age of 35) is to recognize individuals who are doing transformative work.“They are presenting a concrete solution to a big, almost ideally civilization-scale problem.”MIT Technology Review then names one TR35 recipient as “Humanitarian of the Year” to recognize the use of technology in “progressing the human condition.”
What does Paul have to say about receiving this incredible honor?Jump to the 3:40 mark in the video below to see his onstage interview and award presentation.
“I got this call from my brother Stephen, and he said the news doesn’t look good.At that point, he’d been through enough processes to know what that meant – he had ALS.So I began this journey with my brother and my family…. We were thinking there had to be a way to make this about the patient.But it started like everyone else. You get that phone call, and your life changes.” – Jamie Heywood, Co-Founder
Recently, we launched a new and improved About Us page that included a short video about our company history.Now, we’re pleased to unveil a longer, more in-depth video that allows you to hear our founding story from four PatientsLikeMe executives and learn what drew each of them to become a part of our groundbreaking concept.
Tune in below to hear where it all started and why, five years later, we’re committed to continuing the journey we’re all on – as a company, as patients and as family members of those affected by disease.
You can also watch this insightful piece (~15 minutes) in three smaller segments: Chapter 1, Chapter 2 and Chapter 3.
Mashable, the pioneering digital and social media news site, has pronounced today Social Media Day.Why?“Social media has changed our lives,” they wrote in 2010, prior to launching the event.“It has not only changed the way we communicate, but the way we connect with one another, consume our news, conduct our work, organize our lives, and much more. So why not celebrate?”
Mashable is encouraging everyone who uses social media to take part in the second annual celebration.Some examples including organizing a Social Media Day get together on Meetup, posting photos from your get together on Facebook and using the hashtag “#smday” on Twitter.We would add updating your PatientsLikeMe profile and reaching out to another patient like you to this list of possible celebratory activities.
That’s because, at PatientsLikeMe, we’ve seen how social media has transformed the lives of patients.Before, there was only the information and advice provided by your doctors.Now, you have access to a wealth of real-world experiences and data from patients around the globe.As a result, you can ask smarter questions, make better decisions and take greater control of your own care.
Social media has also helped to accelerate medical research.A stellar example is ALS Untangled, a research consortium that uses social media (including Twitter, PatientsLikeMe, NING and open-access journal articles) to investigate alternative and off-label ALS treatments.There’s also the unprecedented ability to survey and learn from thousands of patients, as R&D Director Paul Wicks discusses in this recent video.
So if social media can help both patients and researchers, it’s worth celebrating, no?Share your thoughts on how social media has impacted your life in the comments section below.(And, yes, that would count as another social media activity!)
“We’re just getting started on a long road to really impact your individual disease and your quality of life…”
Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team. You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent changes to PatientsLikeMe mean for patients, research, industry and the entire medical establishment.
Today, listen in to hear what Ben has to say about why we’re on this “road,” what has been improved with the recent upgrades and how sharing your own health journey moves us forward. You can also see last week’s video teaser here.
If you’ve ever tuned in to one of our podcasts or had a chance to view one of our videos, there’s a certain characteristic you might have noticed about me. I’m British. Very British indeed. During the course of my academic research career, I spent 6 years working alongside neurologists, psychiatrists, and a multidisciplinary team of nurses, speech and language therapists, physios, and occupational therapists at King’s College Hospital and the Maudsley Psychiatric Hospital in South London. As you probably know, the United Kingdom (UK) has a very different health system to the United States (U.S.). The National Health Service (NHS), formed in 1948 as part of post-war reconstruction, has three core principles: 1) To meet the needs of everyone, 2) to be free at the point of delivery, and 3) to be based on clinical need rather than ability to pay. Against an aging population and rising medical costs, however, the NHS needs to continually innovate in order to remain cost effective, and the UK’s coalition government has set an ambitious target to maintain quality of care while cutting £20 billion from the NHS budget (approximately $32 billion).
Earlier this month, PatientsLikeMe was invited to participate in the NHS’ second Innovations Expo in East London, a 2-day expo featuring a vast exhibit hall of innovations from the private and public sectors, as well as a packed schedule of seminars and platform presentations from Andrew Lansley (Secretary of State for Health) and Sir David Nicholson (Chief Executive of the NHS). They spoke of plans for radical reform of the NHS, with more power being transferred from central government to General Practitioners (GPs, equivalent to U.S. Primary Care Physicians, PCPs) and much more of an emphasis on something that ties in with our core value: “Patients First.”
We were fortunate to have a “Masterclass Theatre,” where, on behalf of PatientsLikeMe, I was able to share some of our experiences in the U.S. and provide examples of successes we’ve had that might translate well to the NHS. We also gave a couple of more intimate seminars which candidly discussed 5 lessons we had learned from 100,000 patients over the past five years.
In addition to PatientsLikeMe, there were a number of interesting innovations at the event, including a company that does what we do but for doctors (Doctors.net.uk), a patient health record that links into the NHS’ medical notes system and allows clinicians to help manage patients with rare conditions (PatientsKnowBest, founded by a doctor and chronic condition patient), and an information portal that helps provides clinicians with the best evidence to help support their decision making (NHS Evidence). We also attended the launch of an inspiring white paper from thinktank The Young Foundation entitled “Connect: Patients and the Power of Data.” Sensible, compelling, and highly readable, the report starts off with a quote from the coalition government’s white paper on health that we might just make into a plaque: “Information is a health and care service in its own right: it must be freely available to all those who need it.” You can read the report for free here.
For PatientsLikeMe, the UK and the NHS in particular offers a number of interesting possibilities. Because there is less variability in access to care in the UK than the U.S., it might make a better environment in which to evaluate how much benefit our system can have for patients with serious health conditions. The UK also has a strong medical science community and some of the brightest minds with whom to collaborate on research studies (see, for instance, our work with Oxford University). Finally, the UK is an interesting place for us to operate because the system is more aligned to prioritize patient care over profitability; that’s not to say it’s flawless or that cost is not a factor in rationing access to some services. But if the current round of proposed reforms are implemented, it seems that physicians and care providers are going to be evaluated and rewarded on the basis of the outcomes they produce for patients, not just the number of procedures they perform. That sounds just like the world we’d like everyone to live in.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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