paul wicks

Bringing the patient voice to clinical trials

Patient Experiences / By

PatientsLikeMe has a long tradition of bringing the patient voice into drug discovery and development, but it’s only been in the last year or two that industry has been tuning in to hear what that voice is saying about clinical trials. For the last 18 months, we’ve been asking many of our members about their attitudes toward and experiences with clinical trials, and working to ensure pharmaceutical companies understand what patients want most from trials, now and in the future. We talked with Jeremy Gilbert, Vice President of PLM Health, and Paul Wicks, Vice President of Innovation, about what we’ve found, and how that’s already helped to change the design and execution of trials and their future direction. Jeremy will be presenting more about this topic and details of a key project with AstraZeneca and Takeda that leverages the patient voice in new ways at the Patient-Centered Clinical Trials Conference in Philadelphia on October 11. More info about discounted tickets below.   You’ve surveyed more than 1,400 people about their experiences and opinions with clinical trials. What have they shared, and what has PatientsLikeMe done with that information? Jeremy: A lot of people in our community are living with life-altering, degenerative …

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Making sure conferences are “Patients Included”

Patient Experiences / By

Picture this: you’re a medical professional and are about to open the doors to a conference you’ve spent years pulling together. You’ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag and have invited every industry pro to be a part of the event. In walk the physicians; check. Allied health professionals; check. Pharmacists; check. Industry leaders, life science CEO’s and top researchers; check, check, check. Notice anyone that’s missing? If medical conferences exist to create a network, to stimulate new collaborations, overturn redundant thinking, and to help attendees return to work reinvigorated, the conference that excludes patients misses hearing the most important voices in medicine. But luckily for you, patients living with a variety of conditions aren’t just sitting on the sidelines anymore. They’re proactively participating in these conferences any way they can, even if that means going through the virtual window. They watch the hashtag, pose questions, say they wish the conference were live-streamed, and ask attendees to smuggle out knowledge they could use to improve their care or offer them hope. If they’re ignored or marginalized they take to the Twittersphere and let their displeasure be known. “The …

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Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power

Patient Experiences / By

Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started sharing their data with leading researchers to debunk alternative “cures” for their disease and even started taking trials into their own hands. Read what else Paul had to say here. And if you’re interested in learning more, click below to watch Paul talk about patients leading the direction of clinical research in an interview with BioMed Central: Share this post on Twitter and help spread the word.

PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)

Patient Experiences / By

Patients To Share Their Experiences, Help Researchers Better Characterize Disease And Develop Treatment Strategies  CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an online hub for developing and sharing new health measures that better reflect patients’ experiences living with and managing disease. Actelion is the first pharmaceutical company to use ORE to create a measure for a rare condition and, once completed, to share it with other researchers. Actelion’s Senior Director – Medical Head of VALCHLOR and ZAVESCA Mitchell Nagao said he believes this open approach to research will enhance the existing evidence about MF-CTCL. “As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly. Our work with PatientsLikeMe will help ensure we’re applying the best principles for patient-centered research and giving tools back to the community so they can evolve them even more.” PatientsLikeMe Vice President of Innovation Paul Wicks said the project further reinforces that ORE is a proven platform for developing new patient-based measures. “We created …

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PatientsLikeMe selects first pilot users for Open Research Exchange™

Patient Experiences / By

Researchers and Patients to Test New Measures for Hypertension, Treatment Burden, Appetite and Diabetes, Primary Palliative Care CAMBRIDGE, Mass.— August 13, 2013—PatientsLikeMe has named the first four researchers and teams who will pilot test its new Open Research Exchange™ (ORE) platform. Supported by a $1.9 million grant from the Robert Wood Johnson Foundation, ORE was created to help researchers design, test and openly share new ways to measure diseases and health issues. ORE involves patients at each step of the measure development process, enabling PatientsLikeMe’s 200,000+ members to guide and contribute to research so that it better reflects their needs. The four researchers, whose work will be shared in an open library of patient-reported instruments and health measurements, are: Gerald Arnold, Ph.D., M.P.H. and Rebecca Baranowski, M.Ed., M.S. of American Board of Internal Medicine (ABIM). The ABIM will create a primary palliative care questionnaire to help physicians assess how they work with seriously ill patients and their families/caregivers to manage symptoms and plan their care throughout their illnesses, well before they are at the end of life. Tamara Kear, Ph.D., R.N., C.N.S., C.N.N. of Villanova University and Fresenius Medical Care. Kear will create an instrument for patients with high blood …

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PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange™ Platform

Patient Experiences / By

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 …

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PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

1 Comment / Conditions, Patient Experiences, Research / By

Launch at European NHS Healthcare Innovation Expo Comes as PatientsLikeMe Chairman Calls for Revolution in Disease Measurement 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 …

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PatientsLikeMe in the News

Rare Diseases, Research / By

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. 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.

The Ups and Downs of Parkinson’s Disease

1 Comment / Parkinson's Disease, Research / By

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 …

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PatientsLikeMe at Medicine 2.0

Patient Experiences, Research / By

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.   …

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