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.”
“Before me, there were hundreds and thousands of other people with Parkinson’s who participated in clinical trials that gave me the ability to have the medications that I take today. If people today do not participate in clinical trials, there will be no cure. There will be no new medications.” – Parkinson’s patient Jean
Last year, PatientsLikeMe unveiled our Clinical Trials search tool, which helps you find upcoming studies that might be right for you. We also introduced a matching feature that notifies you on your profile when you meet the criteria for a new study. That means when your condition, gender, age and location are all a match.
“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
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.
“Today is a day of massive celebration of what health innovators have done,” said US Department of Health & Human Services’ Chief Technology Officer Todd Park this morning as he welcomed everyone to the 2nd Annual Health Data Initiative Forum (or “Health Data-Palooza,” as Park called it).The goal?To create “a self-propelled, open ‘ecosystem of innovation’ using data to improve health,” he said.
Naturally, the open sharing of health data to help patients is something we’re very passionate about at PatientsLikeMe.In fact, it’s our mission.That’s why my brother and fellow co-founder Jamie got up on stage at today’s event to show just how PatientsLikeMe can do that.As an invited speaker, he unveiled our new Clinical Trials feature, which provides customized, real-time listings from ClinicalTrials.gov to help patients find clinical trials that are right for them as well as help companies find patients who are right for their clinical trial.
In today’s press releaseabout this new “matching” feature, Jamie says, “It’s difficult for patients to find trials and for investigators to find patients. We can help solve both of those problems by telling each of our 100,000+ patients what trials they’re eligible for and by showing each trial sponsor how many patients they can reach.”
Below is an infographic that shows the number of clinical trials in one selected region that are now listed on PatientsLikeMe and the many patients nearby who are eligible to take part in these research efforts. The goal, as we see it, is making the clinical trial matching process faster, easier and more accessible.
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.