3 posts tagged “clinical trial search feature”

How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Posted September 13th, 2012 by

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.

Read Part I of Jeri’s guest post first!

MS Patient, Blogger and Activist Jeri Burtchell (TickledPink at PatientsLikeMe)

Because blogging a clinical trial from start to finish was unheard of, I attracted the interest of not only patients, but those in charge of clinical trials. They are interested in the impact of social media on clinical trials, and how they can utilize it to their benefit. Sites such as personal blogs, FacebookTwitter, and PatientsLikeMe are here to stay and people naturally want to share information.

I got a direct message on Twitter from Craig Lipset, who is Head of Clinical Innovation, Worldwide Research & Development for Pfizer. Social media brought us together to have a conversation about research that never could have taken place before the Internet. Everyone is more connected and approachable now. Naturally, I blogged about it.

But that was just beginning.  Tomorrow, September 14th, at 9:45 a.m. , I will be speaking along with Craig at the Disruptive Innovations conference, where the leaders in pharmaceutical research will be gathering to share ideas and come up with innovative ways of conducting clinical trials that take the “ePatient” into consideration. The 30-minute segment is entitled “Patient Leaders as Key Stakeholders in Clinical Trials,” and I will be there to represent – and put a human face to – clinical trial patients everywhere.

Knowing this is a chance of a lifetime for a trial patient to have the researchers as their audience, I wanted to reach out to those who have participated in past or current trials. My question to them is: “If you could ask or tell researchers just one thing about your own experience as a trial patient, what would that be?”

I plan to attend this conference and speak on behalf of all patients and put a face to the humans behind the data. I want to show them that we are connected now more than ever by social media. Researchers need to harness that power to their benefit. Soon they may use it to recruit and retain trial participants. I would like to see them provide a monitored gathering place for these trial patients to reduce the spread of misinformation as patients share data.

How Many of the 35,000+ Clinical Trials Currently Recruiting Do You Qualify for?  Use PatientsLikeMe's Clinical Trials Search Tool to Find Out!

To people who are considering a trial I recommend using tools like PatientsLikeMe and ClinicalTrials.gov to stay informed about ongoing research and find a doctor willing to support your interest in participating. Remember that not every trial will culminate in a drug that wins FDA approval. By joining a clinical trial you will be taking risks, but you may also be reaping benefits long before the general public will have access to the drug. Never forget that you are a pioneer and by entering a trial you are giving the greatest gift possible. Without volunteers we would have no medical advancements.

I hope that researchers never forget the impact they are having on the lives of people everywhere. They aren’t just going to work every day; they are the makers of miracles. Often patients are joining these trials as a last resort. The work of researchers gives us all promise for a brighter future.

I hope that patients everywhere will take one clear message away from this: NEVER GIVE UP! It would have been so easy that day to end it all. I was depressed and certain my life could get nothing but worse. But, by choosing to fight, I have changed my life forever and doors continue to open for me. By reaching out through social media I know I am not alone. You never know what tomorrow may bring, so don’t give up on today!

Editor’s Note:  Jeri isn’t the only PatientsLikeMe member blogging about her experience in a clinical trial.  See our interview with PGen study participant PF Anderson for another patient’s chronicle!


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.

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