3 posts from July, 2010

Personalized Medicine: Making It All About You

Posted July 29th, 2010 by

pmtopbannerEarlier this year, the University of Arizona hosted a unique meeting for scientists, policy makers, and law experts to explore the legal, ethical, and policy implications of personalized medicine. The opening keynote was by Dr. Lee Hartwell, 2001 Nobel Prize recipient in Medicine / Physiology and Director of the Fred Hutchinson Cancer Research Center and he invited the audience to consider the role of patients in research. He stated that there was an “increasingly important role for patients in this process” and that scientists currently “rely on trial data, totally insufficient to the problem.”  Dr. Hartwell also stated that “when you talk to patients, they want to make a contribution. They would like their medical info made useful to other people. The only thing that keeps them from doing so is the threat of losing their life insurance or losing their job.” The views of pioneers such as Dr. Hartwell are important in medicine and it was energizing to hear such a well regarded figure espousing a philosophy with which we so strongly agree.

The lunchtime speaker was David Ewing Duncan, a journalist whose recent book “Experimental Man” detailed his journey to try and undergo every medical test available to science (including genetics, brain scans, and lab measures) in order to find out more about his health risks and how to live the best life possible. As the cost of genetic sequencing comes down to the mythical “$1,000 genome,” we may one day all take the same journey as Duncan to explore how much of our health outcomes are determined by data accessible to us right now. There will undoubtedly be ethical and moral conundrums along the way as genetic science moves from the specialist clinic to all of us as consumers, but ultimately understanding your own DNA is as much of a right as being able to look in the mirror.

Moving from genotype to phenotype, I gave a presentation in the afternoon about our work at PatientsLikeMe.  More specifically, I focused on how our platform allow patients with serious medical conditions to find out where they stand in the context of other patients like them, and how systems like ours might one day be able to help guide them to the most effective treatments to improve their outcomes.  Highlights from my presentation are now on our YouTube page.

PatientsLikeMe member pwicks


U.S. Transplants Games – Here We Come!

Posted July 27th, 2010 by

A few weeks back, we were delighted to join the National Kidney Foundation of New England at their Transplant Games Team Meeting to give a demonstration of the PatientsLikeMe Transplants Community. Later this week, we’ll be joining Team Mid-New England as their official t-shirt sponsor as they “take the field” for the U.S. Transplants Games in Madison, Wisconsin.
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As part of our demonstration, we focused a lot on the value of creating a patient profile. Everything you’d want to know about your transplantation journey is charted on the profile to make it easier to visually see what’s going on with you before, during and after your transplant.  Many of our patients print out their profile charts and share them with their doctors.  Beyond the individual learning, the power of the patient profile is that it is shared with the entire community.  The treatment and symptom information you enter gets rolled up into community reports so you can see if what you’re experiencing is similar to the experiences of others, and you can help others do the same.

At the end of the session, we had a lot of great questions.  Here are a few:

  • Can you chart how exercise is helping you minimize symptoms after your transplant? Yes – check out the “exercise treatments” that patients are currently adding to their profile.
  • Will PatientsLikeMe partner with smaller nonprofits (like the Kidney Transplant/Dialysis Association (KTDA) and Quarter Century Club? We’re always open to speaking with nonprofits to see how we can work together. Send an email to partners@patientslikeme.com if you think a nonprofit you are involved in would like to partner with PatientsLikeMe.
  • Can you only contact other patients publicly through the forum? No. The forum is a great gathering place for many of our patients, but you can also develop relationships one-on-one by sending private messages or leaving comments on other profiles.
  • Do you have leaflets I can distribute at my dialysis center? Absolutely. If you’re interested in spreading the word in your support groups, you can download some materials on our Tell The World page. If you’d like to receive some more official leaflets to distribute at your Dialysis Center, send us an email with your request at goodies@patientslikeme.com.

We are excited to attend this year’s U.S. Transplant Games.  This will be our first time at the Games, so we are grateful to have our Team Mid New England pros guiding the way.  If you’re coming to the Games, please stop by our booth at the Expo to say hello and pick up some goodies.  And, if you see our logo on the back of a Team Mid New Englander, be sure to ask them for a limited edition PatientsLikeMe Pin.   See you at the Games!

PatientsLikeMe member mcotter PatientsLikeMe member lscanlon


Multiple Sclerosis: Sustaining Care, Seeking a Cure

Posted July 15th, 2010 by

cmsc-logoOur research team here at PatientsLikeMe carries out world-class research in collaboration with academic centers, commercial partners (see “how we make money“), and to help answer questions from our patients. We share our findings with the world through this blog, peer-reviewed publications, and by attending academic conferences like the Consortium of Multiple Sclerosis Centers (CMSC) annual conference. This meeting, now in its 24th year, is for neurologists, nurses, researchers, and other healthcare professionals involved in MS to share their knowledge, network, and form new research collaborations.

In collaboration with our partners at Novartis, our MS community recently participated in a research study exploring the reasons why people don’t always take their disease-modifying therapies as prescribed. Adherence to medication is a big issue in chronic conditions; although we all mean to take our meds as prescribed by physicians, good intentions can fall by the wayside when real life interferes with our plans! Decreased adherence could lead to less medication efficacy, more relapses, and a higher burden of disability for MS patients.

By exploring the messages posted in our vibrant MS forum, and carrying out a review of the scientific literature, we constructed a new questionnaire called the “MS Treatment Evaluation Questionnaire” (MS-TEQ) that sought to explore and quantify the barriers that get in the way of people taking their DMTs as prescribed. As part of the validation process we also showed the questionnaire to some local MS patients to ensure it was easy to understand. In December of 2009, we sent out an invitation to 1,209 carefully selected patients and asked them to complete the MS-TEQ. Within just two weeks, we had complete responses back from 442 patients, a 37% overall response rate.

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The MS-TEQ addresses three areas: 1) MS-TEQ Barriers: the barriers faced by patients that stop them from taking their meds as prescribed (e.g., forgetting), 2) MS-TEQ SEs:  the side effects they experience (e.g., injection site reactions), and 3) MS-TEQ Cope: coping strategies they use to try and cope with these side effects (e.g., using an ice cube to reduce pain and itching). Our analysis found that for every 10 points on the MS-TEQ Barriers scale, patients did not take 10% of their medication as prescribed. However, we also found cause for hope; every coping mechanism they used to try and ameliorate their DMT side effects had a positive effect of 4% on the proportion of their DMTs that they took as prescribed.

At the conference’s poster session, we got a lot of interest from attendees and gave away all of our handouts and copies of the questionnaire, so you might be seeing the MS-TEQ in a clinic near you any day now! Our hope is that the questionnaire will help patients and their healthcare providers to understand why someone is struggling to take their medication as prescribed, and to give them a way of measuring this over time. We are currently preparing a manuscript to submit to a peer-reviewed journal to share our findings with the rest of the academic community.

Do you have trouble taking your MS disease-modifying therapies as prescribed? Check out our treatment database. Thousands of our members have written evaluations of the drugs used in MS, including advice and tips on how to stay adherent to your medication to improve your outcomes.

PatientsLikeMe member pwicks