clinical trials

Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy

3 Comments / ALS / By

You may remember our interview with ALS advocate Debra Quinn from last fall.  Today, we’d like to introduce you to another ALS patient activist in our midst:  Tom Murphy, a PatientsLikeMe member since January 2011.  As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have launched a petition on Change.org that’s gaining steam.  Their goal?  20,000 signatures. Addressed to “corporate citizens, FDA executives and neurologists,” the petition asks that “compassionate use” drugs be made available to ALS patients now.  What this means is that Tom and the Treat Us Now group want promising Phase II drugs showing safety and efficacy to be made available to ALS patients prior to FDA approval.  The reason is simple. ALS patients, who face an average life expectancy of two to five years following diagnosis, don’t have time to wait. Check out our interview with Tom to learn how he became part of ALS Treat Us Now and what two experimental drugs his group is focused on in particular. 1.  How did you get involved in the “Treat Us Now” movement? The ALS community seems to be a very close-knit group of people who readily …

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Information Wants to Be Free

ALS, Patient Experiences, Research / By

(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 …

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2011 “Wow Week” Highlights

Patient Experiences / By

Last June, we shared how our award-winning Clinical Trials tool was a product of “Wow Week,” which takes place every sixth week here at PatientsLikeMe.  It’s essentially our version of Google’s “20-percent time,” or a period of unstructured time where our engineers have the freedom to work on their own ideas.  We believe it fosters passion, experimentation and risk-taking.  In fact, we know it has given how many other site improvements were conceived during “Wow Week” in 2011. The list is quite long (kudos, engineering team!), so we singled out three “Wow Week” projects that seemed to really resonate with our 128,000+ members. MyCycle Engineering Team Credits: Amy Newell, Doug Martila, Ben Zack and Scott Listfield For women, your menstrual cycle can be intricately tied to your health condition(s), as well as how you feel. Now, with MyCycle, you can monitor your cycle length, view it next to your other health information and predict the next start date.  (If you’re a female who has not indicated your gender on your basic information, you’ll need to do so in order to receive access to this feature.) Fuzzy Dates Engineering Team Credits: Jeffrey Chupp (no longer with the company) and Michael Berkowitz …

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A Peek at Our July Newsletter for Members

Patient Experiences / By

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our July edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive.  See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today. MONTHLY MUSINGS How can you stay connected with PatientsLikeMe – and other patients? Let’s say you’re a new member. You’ve completed your profile, but you haven’t connected with that many other patients yet. Some weeks, you forget to check in and update things at PatientsLikeMe because life gets in the way. What can do you to stay on top of your profile as well as what patients like you are learning? Here are four easy ways to get more involved and stay better connected: Saved Search Alerts On the Patients tab, you can search for patients just like you using filters such as condition, gender, age, treatment and more. Now, you can also save your searches and get an email notification anytime someone who meets your search criteria joins. Simply click the …

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BBK and PatientsLikeMe: Combining Strengths to Help Patients Everywhere

1 Comment / Conditions, Patient Experiences / By

Recently, PatientsLikeMe Chief Marketing Officer David S. Williams III had the opportunity to participate in a podcast interview with the industry magazine PharmaVOICE. Along with Bonnie Brescia, a Founding Principal of BBK Worldwide, he fielded questions about how the new alliance between our two companies can both enhance and expedite the clinical trial recruitment process. Listen in to hear what each had to say about what this partnership means and what we hope to achieve together.

A Peek at Our June Newsletter for Members

ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to over the last few rather eventful months, and if you are member who’s not opted in to the newsletter, sign up today. MONTHLY MUSINGS How do you find a clinical trial that’s right for you? There are currently more than 30,000 actively recruiting clinical trials in the US. How do you stay on top of which ones you might be A) interested in, B) eligible for and C) within driving distance of? It sounds like a tall order, but thanks to our new clinical trial search feature, it’s not. Now, you can search real-time listings on our Clinical Trials page (which pulls directly from ClinicalTrials.gov) and bookmark any trials of interest. Beyond parameters such as disease, age, gender and zip code, our search filters allow you to customize your search by keyword, trial phase, type of intervention and the distance to the nearest trial …

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Data Mashups, “Wow Week” and the Fruits of Experimentation

Patient Experiences / By

Recently, I had the pleasure of helping to represent PatientsLikeMe at the 2nd Annual Health Data Initiative Forum, which is known as “Health Data-Palooza” to its friends.  (See our first blog post about this event here.) The forum was conceived as a way to showcase the wonderful things that people are achieving with open government health data, and it was exciting to see the breadth of applications that are being developed. We saw both the real-world efficacy of a system like Asthmapolis, which uses GPS to track where and how often you use your asthma inhaler, as well as Palantir’s mind blowing demo of how to hunt for the source of a food born illness, which I could only describe as “indistinguishable from magic.” Seeing that the federal government is already starting to get results from this kind of open innovation was really heartwarming for me. We were especially honored to win the “Best in Plenary Award” (aka “Best in Show”) for our recent integration with ClinicalTrials.gov, which resulted in our new clinical trial search feature. As one of the engineers involved in this project, it was really great to see how quickly something like this can come together. PatientsLikeMe has a great culture …

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PatientsLikeMe and BBK Worldwide Join Forces to Bring Mass Patient Exposure to the Clinical Research Process

Research / By

CAMBRIDGE, Mass. — June 14, 2011 — Today, PatientsLikeMe, the leading online health platform, and BBK Worldwide, a pioneer in healthcare marketing and patient recruitment, announce an alliance to jointly offer their services to pharmaceutical companies and other industry stakeholders interested in enhancing patient recruitment and retention for ongoing and upcoming clinical research studies. Both companies have a long-standing commitment to raising awareness of trials among patients, as recently underscored by PatientsLikeMe’s award from the Institute of Medicine for its new clinical trial feature and by BBK’s industry-leading research, such as its widely-cited “Will and Why” surveys of global patient attitudes toward participation in clinical studies. “There’s great synergy in our two companies working together,” says Joan F. Bachenheimer, founder and CEO of BBK Worldwide.  “With our leading clinical trial solutions and PatientsLikeMe’s unparalleled patient engagement platform, we’ll be able to create a steady stream of interested and eligible clinical trial participants for clients with the greatest depth of members’ health information in the industry.” Adds David S. Williams, Chief Marketing Officer of PatientsLikeMe, “This is a crucial next step in bringing exposure of clinical trials to our members, beyond just giving them access to ClinicalTrials.gov listings on our site.  By partnering with BBK, an …

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Improving the Clinical Trial Process with Shared Data

3 Comments / Patient Experiences / By

“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 release about 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 …

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