46 posts tagged “paul wicks”

Bringing the patient voice to clinical trials

Posted October 3rd, 2016 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.

 

Jeremy Gilbert, Vice President, PLM Health

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 conditions, and they’re acutely aware of the importance of new drugs coming to market to address their problems. In conditions like MS, where there are perhaps a dozen treatments on the market, people are keenly aware that the drug they’re taking may stop working, so there is great interest in helping new drugs come to market. Our members are vocal, too, about how involved they want to be. About 92 percent of our survey participants said they would be willing to help researchers design clinical trials to make them better for patients. At the same time, our industry partners are looking for ways to improve trial participation, especially since trials will grow more complex. So we’ve found these two groups want to come together to improve the trial experience for everyone. And there’s no better place to start than by involving patients in the trial design process.

Paul: The state of art in designing trials has been to use the advice of physician experts and to review literature and published papers, but patients have been left out. Researchers have told us this is because of legal and regulatory concerns about asking patients about experimental treatments; they don’t want to be seen as promoting a treatment that hasn’t yet undergone testing. They also cite their lack of experience and fears about the extra time it might take them as reasons why they’ve carried on with the status quo. We’ve long believed that online communities like PatientsLikeMe provide a great vehicle to attack those barriers. We can act as an honest broker of information between researchers and patients who want to help, we’ve developed a repeatable methodology to gain patient input, and we’re delivering results in a matter of weeks to researchers to improve their protocols. Increasingly now researchers are coming to us before they design their trial to incorporate the patient voice, which is a great step.

Does what patients want from trials depend on the condition they have?

Paul Wicks, PhD., Vice President, Innovation

Paul: Some elements, such as their desire to altruistically help other patients like them, stay remarkably consistent. But depending on their demographics and the impact of disease, we do see a lot of variation. Working age adults might want extended hours so they can participate outside of normal business hours, whereas older people might prioritize having transport organized for them. It really depends on the aim of the study as much as the condition; some trials are for drugs that slow the progression of a disease, while others are to treat specific symptoms or even to take an existing drug and make it more convenient to take, such as moving from an injection to a pill. Against that you’ve also got the overall commitment required to the trial protocol such as the number of study visits, their duration, any special testing that people have to undergo and, of course, any special measures put in place to mitigate those burdens. We think patients are interested in participating in research in general because of altruism, that they choose to enroll in a particular trial because of its objectives, and that they stay enrolled because of their relationship with trial staff and the level of burden the study incurs on their daily lives.

The design of a trial is just the start. What happens as trials begin, or end?

Jeremy: We’re starting to see another gap now, which is that companies have no way of soliciting feedback from patients as they participate in a trial, to find out what patients think of real trials. This is a surprise, because given most of us are consumers, we’re used to being able to give feedback about a product or our experience at any time. That inspires us to think about how to gather patient input not just about a trial’s design, but also during the trial itself, and even after it ends. And if we can figure out how to share the knowledge that’s gathered, that would help industry design and run even better trials in the future.

Where do you think trials are headed in the future, and how is the idea of patients as partners instrumental in guiding that direction?

Paul: Today, taking part in a clinical trial is like having a part-time job. In the future, we want it to be much more convenient and to harness the digital technologies that have become a normal part of daily life. We’re also looking at novel technologies to see if we can do away with some of the aspects of trials that patients dislike, such as placebo arms. Using online digital platforms, it might be possible to produce enough carefully-matched historical controls to more rapidly identify when a treatment is having an effect. That could reduce costs, speed up trials and ultimately increase the number of “shots on goal” that researchers can take to fight disease.

 
Note: Jeremy will be presenting more about this topic at the Patient-Centered Clinical Trials Conference in Philadelphia on Tuesday, October 11 at 2:00 PM. He’ll be joined by Arnold Degboe, Director of Patient Reported Outcomes, Health Economics and Outcomes Research at AstraZeneca. They will talk for the first time about their work to change clinical trials with patient feedback. Discounted tickets for patients and industry participants are available from the conference organizer. Please contact Katie Gadsby for further information at kgadsby@eyeforpharma.com.

 

 

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Making sure conferences are “Patients Included”

Posted May 1st, 2015 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 slow boring of hard boards”
Over a decade ago the Outcome Measures in Rheumatology (OMERACT) began inviting patients to its meetings, initially as observers, later as participants and then finally as true co-producers. It was a long journey, and as patient research partner Maarten de Wit has described, not always easy for its patient members. However the team has documented the benefits of patient inclusion such as: “widening the research agenda; including patient relevant outcomes in core sets; enhancing patient reported instruments; changing the culture of OMERACT… identifying previously neglected outcome domains such as fatigue, sleep disturbances and flares which prompted collaborative working on new programmes of research.”

A new mechanism for change
On May 1st 2015, a group of volunteers hope to take patient inclusivity to the next level by releasing version 1.0 of a crowdsourced charter called #PatientsIncluded. It contains five clauses based on Lucien Englen’s astute observation that there are too many conferences lacking patients on the planning committee, on stage, and in the audience. Medical conferences that are certain they meet the criteria have the right to use the “Patients Included” logo, and we hope will rapidly come to realize the benefits that can accrue.

The charter is by no means a silver bullet – it is a tool to encourage conference organizers to think past tokenism, be ambitious in their striving to integrate, and to reward those who take the uncomfortable step to try something different. My hope is that a wellspring of advice, best practices, and strategies will emerge from conference organizers as they deal with issues of cost, inclusivity, managing tensions, and reflecting on the changes made. Patients will develop their own resources to help one another plan, influence, participate, and engage in what might well be an uncomfortable and unfamiliar environment themselves.

As a member of the 5-strong patient panel at this month’s International Forum on Safety and Quality, hosted by the BMJ, there was much to admire from the way patients were celebrated and invited to speak and chair sessions. It was also clear that the scientific advisory board is taking seriously the notion that patients are  experts in their own right with much to offer. However it’s clear too that advocating and just being physically present at a medical conference is hard and exhausting work.

I hope actors on both sides of the qualification fence will work to support one another and acknowledge that this is a journey. Mistakes will be made. Iterations will have to occur. The name itself, version 1.0, demands that we constantly realign  and have the confidence to continue forward. The reward for the future will be that of professionals and patient-experts joining forces to advance our collective understanding of illness, formulate new plans of attack, and forge new weapons in the fight against disease.

PatientsLikeMe member PaulWicks

 

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

Posted April 30th, 2015 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:

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

Posted August 5th, 2014 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 ORE to help patients and researchers work together to transform care and discovery that truly serve the patient. Now we’re past the initial pilot stage, and it’s exciting to see members of industry engaging with patients to develop more tools that really measure what matters to patients.”

Actelion will work with PatientsLikeMe to engage people who have MF-CTCL for support and research and to develop and test the tool. PatientsLikeMe welcomes anyone with MF-CTCL who is interested in contributing to join in at www.patientslikeme.com.

Cutaneous (skin) T-cell lymphomas (CTCL) are non-Hodgkin’s lymphomas that primarily involve the skin but can also involve the lymph nodes, blood and other organs. Mycosis fungoides (MF-CTCL) is the most common type of CTCL.

About Actelion Ltd.
Actelion Ltd. is a leading biopharmaceutical company focused on the discovery, development and commercialization of innovative drugs for diseases with significant unmet medical needs. Actelion is a leader in the field of pulmonary arterial hypertension (PAH). Our portfolio of PAH treatments covers the spectrum of disease, from WHO Functional Class (FC) II through to FC IV, with oral, inhaled and intravenous medications. Although not available in all countries, Actelion has treatments approved by health authorities for a number of specialist diseases including Type 1 Gaucher disease, Niemann-Pick type C disease, Digital Ulcers in patients suffering from systemic sclerosis, and mycosis fungoides type cutaneous T-cell lymphoma. Founded in late 1997, with now over 2,400 dedicated professionals covering all key markets around the world including Europe, the US, Japan, China, Russia and Mexico, Actelion has its corporate headquarters in Allschwil/Basel, Switzerland. Actelion shares are traded on the SIX Swiss Exchange (ticker symbol: ATLN) as part of the Swiss blue-chip index SMI (Swiss Market Index SMI®). All trademarks are legally protected.

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. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

###

Contacts
Samantha Cummis
Actelion USA
+1 650.808.6615
samantha.cummis@actelion.com

Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com


PatientsLikeMe selects first pilot users for Open Research Exchange™

Posted August 13th, 2013 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 pressure to capture how they are doing between visits with their practitioner. It will also identify barriers in hypertension management, one of the factors prompting a rise in kidney disease.
  • William Polonsky, Ph.D., C.D.E. of the Behavioral Diabetes Institute. Polonsky is interested in developing a measure for diabetes patients that shows the impact of certain diabetes medications on satiety, or the feeling of being full.
  • Dr. Phillippe Ravaud, M.D., M.Sc., Ph.D. and Dr. Thi Tranviet, M.D. and Ph.D. candidate of the METHODS Research Team in Paris. They will validate a French-based questionnaire among English-speaking patients with multiple chronic conditions. The questionnaire measures the level of burden imposed by prescribed treatments so that providers know when their treatment regimes are too much for patients to handle.

Podcasts from and full details on the researchers are available at http://www.openresearchexchange.com.

PatientsLikeMe Research and Development Director Paul Wicks, Ph.D. said a wide range of researchers applied to the program after the company issued a call for participation during the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference in May. “We were astounded at the depth and breadth of measures that people want to create. We’re more confident than ever that our open approach and environment, and its link to a large and very active patient network, makes ORE the best platform for creating completely new ways to measure health.“

RWJF Senior Program Officer Paul Tarini said ORE’s focus on improved measurement will lead to improved care. “ORE has the potential to not only break new ground in the way research is conducted, but to help patients capture and report on outcomes that are much more meaningful to them.”

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 35 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.


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

Posted May 20th, 2013 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 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


PatientsLikeMe Unveils New Tool to Match Patients with Clinical Trials Worldwide

Posted March 13th, 2013 by

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.”


PatientsLikeMe in the News

Posted March 6th, 2013 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.

Paul Wicks at TED2013

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

Posted February 5th, 2013 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.

A Sample PDRS Chart Showing Ups and Downs in Disease Progression

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.

PatientsLikeMe member tvaughan


PatientsLikeMe at Medicine 2.0

Posted September 26th, 2012 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.

The 5th Annual Medicine 2.0 Congress Took Place in Our Home City of Boston

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:

Click Here to See Cassie's Very Cool Sketch!

A Quote From Jamie Heywood's Keynote Address

Sally Okun's Poem Resonated with Susannah Fox and Others

This Quote in Jamie's Talk Got a Lot of Attention

We Like These Big Important Questions About PatientsLikeMe!


What We’re Reading at PatientsLikeMe

Posted July 2nd, 2012 by

Here are some of the media items that grabbed our attention recently.

What Air Traffic Can Teach Us About Kidney Transplants
Air traffic rules balance fairness and efficiency. Can organ waitlists do the same?

Open Access Is Not for Scientists.  It’s for Patients.
A guest blog post by our R&D Director, Paul Wicks, for the Public Library of Science.

What We're Reading at PatientsLikeMe

Snake Oil?  Scientific Evidence for Health Supplements
A very cool health data visualization from Information Is Beautiful.

Facebook Urges Readers to Add Organ Donor Status
Are you going to add your organ donor status?

Glenn Close:  Let’s End the Stigma Around Mental Illness
A great look at how we discuss mental illness – and the impact our words can have.

What are you reading?  Share your recommendations in the comments section.


ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital

Posted April 9th, 2012 by

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).

A Section of the ALSFRS-R Questionnaire Pertaining to Speech Impairment

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.

A Chart of the Remarkable Similarity Between ALSFRS-R Scores as Reported by ALS Patients (Bottom Axis) and Their Clinicians (Left Axis)

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.”

The published study is now available open-access and so is free for all to read in its entirety. We’ll also have an interview with lead study author Dr. Thomas Meyer soon, so stay tuned.

PatientsLikeMe member pwicks


Information Wants to Be Free

Posted February 22nd, 2012 by

This Editorial by our R&D Director, Paul Wicks, PhD, Was Published in the Scientific Journal Clinical Investigation.  Click to Read the Full Article.

(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.

The Clinical Trials Search Feature at PatientsLikeMe

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?

Read the rest of R&D Director Paul Wicks’ editorial in Clinical Investigation here.

PatientsLikeMe member pwicks


Holidays Wishes from PatientsLikeMe to You

Posted December 23rd, 2011 by

A Group of Very Jolly PatientsLikeMe Employees

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.

Ben Heywood

“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

Paul Wicks

“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

David S. Williams III

“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 Business Development

Robert Palladino

“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

Jamie Heywood

“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder

Happy Holidays!