26 posts tagged “clinical trials”

Why Should I Participate in a Clinical Trial?

Posted June 8th, 2012 by

“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.

Anyone (Members or Otherwise) Can Use the Clinical Trials Search Tool at PatientsLikeMe

But if you’re unfamiliar with the clinical trial process, the idea of participating in a study may be a bit daunting.  That’s why the National Institutes of Health (NIH) recently launched a new microsite called NIH Clinical Research Trials and You.  Here you’ll find a clear overview of how clinical trials work as well as a number of personal stories from both study volunteers as well as researchers.

Below are two volunteers’ stories to give you a sense of the different reasons people have for participating in research.

Jenny (Type 1 Diabetes)

Jean (Parkinson’s Disease)

Have you participated in a clinical trial?  Share your experiences in the comments section.


A Day in the Life of Biz Dev Team Member Arianne Graham

Posted May 16th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris NecocheaResearch Assistant Shivani Bhargava, Office Manager Alison Dutton and Research Scientist Timothy Vaughan. Today we hear from Arianne Graham, a Harvard MBA graduate who joined the business development team in 2010.  What current project is she most excited about?  And how is working at PatientsLikeMe different than her previous healthcare jobs?  Find out that and more in our interview.

1.  What’s it like to be part of the business development team?

When spending time with friends and family or even meeting new people, I’m always excited to answer that small talk question: “What do you do?” I happen to think I have the best job ever.

Arianne Graham, Business Development at PatientsLikeMe

As part of the business development team here at PatientsLikeMe, my colleagues and I work with everyone who cares about patients (including providers, researchers, pharmaceutical companies, insurance companies, pharmacies, and many more!). We look at how the real-world data shared by our members can transform their businesses for the benefit of patients everywhere.

Sounds like fun, right? Most of the time, it really is. This is also hard work, though. Sometimes I feel as though the rest of the world is not yet ready to hear the patient’s voice. The truth of each patient does not always fit perfectly inside the constraints of a randomized clinical trial or a research protocol. But it’s here to stay, and we are actively finding ways to layer this emerging data source on top of the world in which we live. That’s reason enough for me to get up every day and come to work with my very talented team.

2.  What kind of projects are you working on at the moment?

I am often the first contact for individuals and organizations that contact us via partners@patientslikeme.com or support@patientslikeme.com. We receive multiple messages a day with ideas regarding how PatientsLikeMe might work with another company or integrate a new technology. It’s up to me to prioritize which opportunities to pursue now given the market landscape, and which to save for later.

One of our most basic and popular services is clinical trial recruiting. On any given day, I have to do something related to one of these campaigns. The members that use PatientsLikeMe are probably more likely than most to be motivated to try investigative therapies, to access better healthcare, or to simply participate in research. Finding the right patients for a study can be so difficult, but thanks to the demographic and health data patients report to us, we can easily let patients know about clinical trials for which they may be eligible.

The Clinical Trial Matching Tool at PatientsLikeMe

The project I am most excited about, however, is a clinical trial of PatientsLikeMe as an intervention. We have partnered jointly with a pharmaceutical company and an integrated payor/health system to empirically test the effects of the website on patient activation and health literacy. Additionally, this is one of the first projects to really integrate PatientsLikeMe into the clinical encounter between doctor and patient. We haven’t publicly announced the details yet, so stay tuned. I can’t wait to tell you more!

3.  How have your parents – who are both doctors – influenced your career?

As the child of two pediatricians, I know I was exposed to the healthcare industry and certainly aware of it more early in life than most people. I noticed and appreciated that they treat their patients as people, not diseases. They remain committed to serving their patients, to helping them get better so they can lead productive lives. For them, the medical field is not so much a job as a calling. I know I felt led to serve, too. Even when I abandoned my pre-med plans in college, I knew that healthcare is where my heart is. I just found another way to pursue it.

I cannot imagine working outside of this industry because it appeals to me on so many levels: I can serve others, and I’ll never get bored. Healthcare is what we used to call in consulting a “big, hairy, ugly.” It is messy and complicated, it affects us all, and there are no clear answers. All of that makes this sector intellectually stimulating and extremely rewarding.

4.  You’ve worked for pharmaceutical companies, a hospital and a consulting firm.  How is working at PatientsLikeMe different?

I think all of my previous work experience has prepared me well because I lean heavily on what I know to be true in healthcare in my current role. While I knew exactly what to expect in pharma, hospitals, and in consulting, PatientsLikeMe has proven to be a bit like the Wild Wild West. We are creating a world that never existed before: where patients take charge, and their real experiences are being integrated into the healthcare system around them. There are absolutely no rules yet. It’s exciting and uncomfortable; inspiring and frustrating. And you know what? I wouldn’t have it any other way.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Marketing Coordinator, Community ModeratorResearch Client Manager and more at the moment.


The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer

Posted April 27th, 2012 by

Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score.   Now, we’d like to share our interview with lead study author Dr. Thomas Meyer, a neurologist at Charité University Hospital in Berlin, Germany.  What role did PatientsLikeMe play in this research?  And what are the study’s implications for the future of clinical trials?  Find out that and more in our interview with Dr. Meyer below.

Dr. Thomas Meyer, Neurologist at Charite University Hospital in Berlin

1.  When did you become interested in patient-reported outcomes?

In 2005, we first used tablet PCs in our outpatient department to capture patient-reported outcomes (PROs). To us neurologists, PROs play a crucial role. Many neurological conditions can be captured by means of PROs only – I am thinking of pain in neuropathies, spasticity in multiple sclerosis (MS), the subjective perception of movement ability in Parkinson’s syndrome and dyspnoea (breathing difficulty) in neuromuscular conditions, including ALS. Given this fact, we neurologists have always listened to our patients a little more carefully so that we can do a good job. Therefore, the systematic capturing of PROs is a natural process to us, and we are most happy to be able to support any advancement and positive development thereof.

2.  Your study showed remarkable agreement between the two ALSFRS-R reporting methods.  Were you surprised that they were so similar?

You are absolutely correct. Correlation here looks like a textbook example of medical statistics. We were indeed very surprised to find that the data were so unequivocal.  Notwithstanding, our previous experience with the offline electronic capturing of ALSFRS-R had taught us that the data captured in a personal interview are very close to those captured in computer-based self-assessments.

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

Then we took the next step and progressed from offline to online assessment. Other work groups had already shown good correlation between the face-to-face capturing of the score on the one hand, and data capturing over the phone on the other. That was very useful upfront information for us. Insofar, the success of our study didn’t come as a complete surprise to us.

3.  How did Dr. Paul Wicks, PatientsLikeMe’s Director of Research & Development, contribute to this research project?

Our great interest in the issue of PROs in ALS goes back a long time. Nevertheless, we were very much aware of the fact that PatientsLikeMe is by far the most experienced organization with regard to PROs worldwide and also the one that identifies with this topic most. So, a small group of four of us flew from Berlin to Boston to introduce our clinical trial to PatientsLikeMe and to learn from their experience. Once we had concluded the study, we flew to Boston once again to see Paul and to prepare the paper. We profited immensely from Paul’s input, and he gave the manuscript a superordinate perspective.

PatientsLikeMe Research & Development Director Paul Wicks, PhD

So it is for a good reason that he is listed as co-author of this publication. Overall, this scientific research project was a collaboration between the Charité University Hospital and PatientsLikeMe. I believe it is also an important, gratifying and affirming experience for PatientsLikeMe to see that in terms of methodology the online capturing of PROs is at least equal to an interview conducted face-to-face. I can even imagine situations where the online mode of capturing PROs is actually better than a personal interview, especially where rather complicated and very private issues are addressed. This is just one of the many points we discussed vividly with Paul.

4.  Do you believe online patient reporting will become an acceptable practice for clinical trials?  What are the ramifications if it does?

I can very well imagine that the online capturing of PROs will one day become an integral part of clinical trials. It is quite an obvious thing; however, owing to regulatory requirements, it will be quite some time before it will actually be possible to implement this. The bottom line is that clinical trials will have to be conducted for each score demonstrating equivalence between paper-based and web-based capturing. Not all of the scores have actually been evaluated for online capturing. Another critical point surely is Internet access.

Having said that, it certainly also depends on the patient group and the actual medical condition under examination. I suppose that from a medical-ethical point of view it is problematic to exclude patients from a trial simply because they are unable to realize an online completion of the score. In this regard, I believe the first step to be taken must be to demonstrate equivalence between online and offline capturing of the score. Then one could give patients the option of using online assessment in the context of participating in a clinical trial and see what they would prefer to do.

The benefits would be immense. This method could highly enhance the quality of the data, the efficiency of data capturing and, not least of all, it would help reduce the costs of a clinical trial. I believe that online assessment will be a matter of course in the future, but not immediately.


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

Posted March 9th, 2012 by

ALS Activist and Petition Co-Author Tom Murphy

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?

ALS Treat Us Now Is a Nonprofit Organization Dedicated to Accelerating Access to ALS Treatments

The ALS community seems to be a very close-knit group of people who readily share information and collaborate openly.  This is often related to the objectives of spreading ALS awareness, accelerating new treatments for people with ALS, and most importantly, doing whatever we can to assist in the identification and development of a cure for this rare and terminal disease that has been with us for way too long without an effective treatment or hope for a cure.

Since being diagnosed with ALS in December 2010, I (and many others like myself) have developed a very extensive “network” within this community utilizing blogs, email, Facebook, Tumblr, Twitter, LinkedIn, PatientsLikeMe, ALS Therapy Development Institute (ALS TDI), the Muscular Dystrophy Association (MDA) and the ALS Association (ALSA) and other ALS-related internet sites.

This network included Ms. Sherron Greene from Kaplan, LA (whose brother Kendall was officially diagnosed in October 2010), who was working with the Treat Us Now group and reached out for my assistance with some research and ALS points of contact at various medical facilities involved in ALS clinical trials. I wanted to be part of this Treat Us Now team and the rest is history.

2.  What kind of response have you received to the petition so far?

As of 12:00 p.m. EST today, we’ve gotten 10,520 petition signatures.  I’d ask folks to please take the time to watch the complete video below about my friend Kendall Saltzman, and you will begin to understand much better the urgency of our fight regarding compassionate use drugs for people with ALS.

3.  Tell us about the two drugs – dexpramipexole and NP001 – mentioned in the petition.

Highly related to the Parkinson’s disease drug pramipexole (Mirapex), the neuro-protectant dexpramipexole (Empower) may slow ALS progression by keeping the power on in deteriorating motor nerves. Dexpramipexole is thought to maintain mitochondrial function in people with ALS by detoxifying reactive oxygen and nitrogen species.

In the Phase II study, ALS progressed 31% slower in patients taking 300mg of dexpramipexole daily compared to placebo.  It also appeared to be safe and well-tolerated.  The drug, now licensed to Biogen, is currently being tested at the Phase III stage in about 800 patients at 81 sites worldwide.  ALS TDI calls it “extremely promising.”

US and Canadian Locations for the Dexpramipexole Phase III Clinical Trial

In May 2011, I was one of the first 10 ALS patients to be enrolled in the Phase III trial at the University of Virginia.  The FDA fast-tracked dexpramipexole in 2009 due to the need for a more effective treatment for ALS.  Initial Phase III results are expected in 2013.  (Learn more about dexpramipexole here.)

The experimental drug NP001, administered by intravenous injection, is still in the Phase II clinical trial stage.  NP001 may lower the levels of activated cytotoxic macrophages in people with ALS, thus reducing inflammation and further injury to the motor nerves.  The Phase II double-blind, randomized, placebo-controlled trial is ongoing at several US locations.  Unless an early usage allowance is granted, it may require an additional 5-7 years of testing.

Led by top ALS researcher Dr. Robert G. Miller of Forbes Norris MDA/ALS Research Center in San Francisco, this trial is notable as the scientific foundation of NP001 is extremely sound.  Andrew Gengos, CEO of Neuraltus, the manufacturer of NP001, says, “Our hope is that if we can reduce or eliminate the neuroinflammation, it will have a beneficial effect on the underlying progression of ALS.”  (Learn more about NP001 here.)

4.  Beyond signing the petition, what else can people do to become ALS activists?

Take part in the activities and initiatives of the ALS Association (ALSA), the Muscular Dystrophy Association (MDA), the ALS Therapy Development Institute (ALS TDI, founded by PatientsLikeMe’s Jamie Heywood) and Treat Us Now.

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What does PatientsLikeMe think about compassionate use?  “Our society needs to rethink the balance of risk and reward to allow patients the right to pursue the treatments they believe can help them,” says Co-Founder and Chairman Jamie Heywood, whose brother Stephen died from ALS. “This is a complex problem with many balancing issues, but I believe that there needs to be a mechanism for those that consent and who understand the risks to pursue options they chose regardless of regulatory status. Those facing illness should not be denied the right to self-determine their own path to life, liberty and the pursuit of happiness.”


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


2011 “Wow Week” Highlights

Posted January 27th, 2012 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.)

A Look at the MyCycle Feature at PatientsLikeMe

Fuzzy Dates

Engineering Team Credits: Jeffrey Chupp (no longer with the company) and Michael Berkowitz

Are you often fuzzy about your dates?  So are most people.  In recognition of the fact that photographic memory is a rare trait, you can now specify dates with varying levels of accuracy or “fuzziness” – the year (2008), the year and month (May 2008) or the full date (May 22, 2008).  Whatever you can remember is better than no data at all!

Entering Dates at PatientsLikeMe Got a Lot Easier in 2011

Mobile InstantMe

Engineering Team Credits: Steve Hammond, Thomas Mayfield, Joe Rodriguez, Keenan Brock, James Kebinger and Doug Martila

For InstantMe (our daily log of how you’re feeling) to be more instant, we needed an app, right?  This mobile website/application uses HTML5 to support the tracking of your InstantMe scores on your iPhone, iPad or Android smartphone.  Learn more about what it can do here.  (Note that this feature is now open to all members, regardless of their star level.)

Feeling Good in the Grocery Store?  Take the InstantMe Survey on your iPhone!

Are we right?  Did these new tools and features add more “Wow” to your PatientsLikeMe experience?  We’ve love to hear your thoughts in the comments section.  And as always, stay tuned to our Release Notes page for the latest technology updates and innovations.

PatientsLikeMe member wpeterson


A Peek at Our July Newsletter for Members

Posted August 3rd, 2011 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 Searches at PatientsLikeMe

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 yellow bell icon to turn on these alerts.

Profile Update Reminders
Things happen with your health all the time – not just on the day you’ve got a doctor’s appointment. Why not sign up to get regular email prompts to update your profile? It’ll help you capture subtle changes, spot emerging patterns and have a complete record for your Doctor Visit Sheet.

Mobile InstantMe Update
Has something with your health put you in a good or bad mood today? Update your InstantMe survey on the go using your iPhone/iPad. (See “This Month’s Site Improvements” below for more details on this new application (or “app”), currently available to three-star members.

Thread/Profile Subscriptions
Have you noticed that certain PatientsLikeMe members have a similar health status as you…but are trying a different treatment? Follow their experiences with other treatments by “subscribing” to their profiles and/or forum threads. Their updates will then automatically feed to your homepage.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your awesome feedback as we continue working to improve our site. In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for July:

InstantMe Mobile App for iPhone/iPad

Are you an iPhone or iPad user? We have taken the first steps towards an app that will allow you to update your InstantMe survey on the go! No matter where you are, you can now share how you’re feeling and why.

Before rolling it out to everyone, we’re first giving our three-star members access to this app to help us test it out. (If you earn three stars, you’ll automatically see the button to download the app on your profile.)  Stay tuned as we work to expand this new and exciting functionality to all members as well as other types of mobile devices.

Last month, we introduced our clinical trial search feature, and since then, you’ve given us a lot of helpful feedback. Thank you! Here are some of our recent upgrades based on your input.

New Clinical Trial Search Options

  • Now you can select “Dismiss All” to clear out a large number of clinical trial matches – instead of having to delete them individually.
  • Want to search “closed trials” that are no longer actively enrolling? Now you can do that too. This is helpful for past trial participants as well as those taking a drug that may be under investigation.

BBK and PatientsLikeMe: Combining Strengths to Help Patients Everywhere

Posted July 7th, 2011 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.

PharmaVOICE Podcast Featuring PatientsLikeMe's David S. Williams III and BBK's Bonnie Brescia


A Peek at Our June Newsletter for Members

Posted July 1st, 2011 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?

PatientsLikeMe's Advanced Search Options for Clinical Trials

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 site.

Clinical Trials Link on Every Patient Profile

Too busy to do regular searches? No problem. We have added a new link on your profile that shows the number of actively recruiting trials you may be eligible for based on your profile data. That way, you’ll get a heads up any time you log on to your profile. Simply click through to see what they are, who else at PatientsLikeMe may be eligible, where the study locations are (in helpful map form) and how to enroll.

Sounds easy, doesn’t it? We thought that’s how it should be, which is why we’ve been working hard to make this feature to available to you. Turns out others think it’s a pretty great idea too. We were recently honored with the “Best in Show” award at the 2nd Annual Health Data Initiative Forum for this innovative service.

THIS MONTH’S SITE IMPROVEMENTS

We are constantly working to improve our site. In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for June:

New Alert Tools for Saved Patient Searches

Ever wonder if any new patients like you have joined the site? Now you can be alerted by email when there are new results to a saved patient search. Simply click the alert button (the bell icon) next to your saved search to receive notifications.

For instance, want to know when a new patient taking a particular treatment joins? Easy. Create a saved search for that treatment and click the alert button.

PatientsLikeMe "Checkup" Reminder Emails

The best way to see how your treatments, symptoms and conditions are affecting your overall health is to keep your profile up-to-date. Sign up today to receive reminder emails that make it quick and easy to keep your profile current. If you already receive these notifications, you’ll see we’ve updated them a bit.


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

Posted June 21st, 2011 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.)

Software Engineer Jeff Dwyer at the 2nd Annual Health Data Initiatives Forum

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 of encouraging innovation, which is manifested in our decision to declare every sixth week “Wow Week.” During this special week, every engineer has the latitude to experiment with whatever they’d like.  Thanks to the existence of open data sources, there are an amazing number of things we can try without even needing to ask for permission or special access.

One “Wow Week,” PatientsLikeMe Data Analyst and Software Engineer James Kebinger experimented with integrating the listings from ClinicalTrials.gov into our platform. We are committed to using open source tools and data as much as possible at PatientsLikeMe, so James’ idea to pull data from ClinicalTrials.gov was a natural continuation of that philosophy. It took just one more week from there to get to the point where we all realized that this was something that could deliver real value to both our patients and the folks running the clinical trials.

Here is a video of PatientsLikeMe Chairman and Co-Founder Jamie Heywood presenting our new clinical trial search feature at the “Health Data-Palooza” event:

Data mashups have been the buzz for a while now, and there are a number of interesting results that have come out of integrating two large datasets. I think what excited people most about our application was that we found a really clear benefit to patients.  Of course, this wouldn’t have been possible without the comprehensive data found on every patient profile at PatientsLikeMe. We like to think about doing as much as we can for our patients while not having to ask additional questions, and I think this was a great example of succeeding in that aim.

PatientsLikeMe member jdwyer


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

Posted June 14th, 2011 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 established leader in the space, we can now reach many more patients to let them know about potential clinical opportunities that address their specific, unmet medical needs.”

To help expand its targeted patient population for recruitment purposes, the two companies will launch national and regional multi-media campaigns to help drive patients to sign up for PatientsLikeMe, where there are currently 100,000+ patients with more than 500 conditions.  While patients will benefit from sharing their health data and experiences on the site, BBK and PatientsLikeMe will offer industry partners tiered access to interested patient members who meet their trial criteria. Trial sponsors also will be able to leverage the PatientsLikeMe platform and the BBK technological solutions and communications expertise to establish powerful retention programs.

The partners will unveil their patient recruitment and retention program at the 47th Annual Drug Information Association (DIA) Meeting in Chicago, IL next week.

About BBK Worldwide

BBK Worldwide is globally renowned for accelerating time to market for new and improved medicines and treatments by using innovative strategies, programs, and technologies to streamline the clinical trial enrollment process. With offices in Boston, London, Los Angeles, and Osaka – as well as strategic alliance partners in every world region where clinical trials are conducted – BBK Worldwide has evolved into the internationally recognized leader in patient recruitment. BBK continues to reshape its industry by combining its visionary perspective with three decades of experience enrolling thousands of clinical studies in more than 70 countries. www.bbkworldwide.com

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]


Improving the Clinical Trial Process with Shared Data

Posted June 9th, 2011 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 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.

Clinical Trials Recruiting Near Massachusetts and the Patients Eligible for Theme

PatientsLikeMe member bheywood