paul wicks

Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)

The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community.  In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times.  All of this is because of what you share with us. Yesterday, we highlighted some of the research work we’ve done in 2010 across our four newest communities.  Today, we’ll highlight our older communities.  Below is also a highlights reel of some of this work. HIV Throughout 2010, we discussed the goal and benefits to measuring your quality of life (QoL). This concept of measuring QoL started in our HIV Community at the end of 2009. Earlier this year in a blog and podcast, Researcher Michael Massagli Ph.D. discussed some of the insights that are being shared by HIV patients through the QoL survey. For instance, we found that the average physical, mental and social well-being score of patients with a CD4 count below 200 is significantly lower than for those of you with a count above 200. Parkinson’s Disease The Parkinson’s Community has always excelled in reporting their health status through the Parkinson’s Disease Rating Scale (or PDRS). When answering …

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Share and Compare: A PatientsLikeMe Year in Review (Part II – R&D)

The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011.  Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010. The R&D team published and presented some unprecedented insights based on what you shared with us this year.  In addition to attending and presenting at some noteworthy conferences in 2010, we also published a series of blogs and podcasts pulled together just for you. Based on your feedback, the R&D team also implemented some changes to the medical architecture that will help improve the research we do, as well as your experience as a patient on the site.  Ultimately, we are working to develop tools that help you answer the question: “Given my status, what is the best outcome I can hope to achieve and how do I get there?” Today and tomorrow, we’ll be highlighting some of the work we’ve done in 2010 focused on various communities.  Today, we start with the following (listed from newest to oldest community): Organ Transplants Researcher Catherine Brownstein MPH, Ph.D. presented a poster at the American Society of Nephrology (ASN) …

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PatientsLikeMe at the American Epilepsy Society Meeting 2010

Earlier this month, PatientsLikeMe was fortunate enough to attend the 64th Annual Meeting of the American Epilepsy Society in San Antonio, Texas. We were there to spread the word about PatientsLikeMe to some 4,000 attendees including epileptologists (physicians specializing in the treatment of epilepsy), neurologists, nurses, and researchers. We had a great spot on the booth of our partner UCB, which featured a large display for us to show the site to conference delegates and answer any questions they might have. Some of the typical questions we got were: “Is this free for patients to use?”   Answer: yes! “How do patients record their seizures?”  Answer: they can very quickly and easily enter both the frequency and severity of each kind of seizure they had during the week “Can I send you some patients?”  Answer: definitely! “What kind of research can you do with the site?”  Answer: stay tuned… We were also there to present a poster comparing our data to another large data set, the Pharmetrics insurance claims database. Now, we know reading about statistics isn’t the most thrilling of subjects, but the idea was to answer another important question we hear all the time: “How biased is your community?” …

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The Patient Rules. A Discussion with the PatientsLikeMe Executives

We recently sat down with our executive team here at PatientsLikeMe in our first-ever roundtable-format podcast.  In this PatientsLikeMeOnCallTM interview, we ask Co-founders Ben and Jamie Heywood, Chief Marketing Officer David S. Williams III, and R&D Director Paul Wicks PhD to discuss why our recent series themes are so important to the history and future of PatientsLikeMe. Blog Series Themes: “Share and Compare” – where you learned more about how and why patients like you are sharing their health information to put their experiences in context. “One for All” – including visualizations on how one member of a community can be the catalyst for a universe of unparalleled dialogue and support. While discussing how patients can continue to drive the health care process, they also help us preview this week’s discussion called “Treat Us Right.” Treat Us Right In this series, we focus on how you can see if your treatment is right, just by the information shared by patients like you; and how important your shared information is to research efforts – both for academia and industry to learn how they can help each of you make good choices about your treatments.  We’ve heard you tell industry to “Treat …

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“To Measure Is To Know”

Always check primary sources…. This was the title of a brief message sent to me from Paul Wicks, our head of research here at PatientsLikeMe.  He was referring to a quote I have used as my email signature for the last few years; he had discovered I had wrongly attributed it to Archimedes. “To measure is to know” is the quote in question.  I originally sourced it when searching on Google for quotes on measurement, which is one of my passions.  I believe I found it on this website where it is listed among a number of business quips. The irony is not lost on me that the Internet fooled one of the founders of a company that sells scientific data collected on the Internet into using a false reference. I suppose it is possible that Archimedes, as one of the founders of modern science, believed in the value of measurement and might have said some Greek variation of the phrase.  Unfortunately for me though, a reasonably extensive search does not indicate there is any evidence he actually uttered those words or anything like them.  “To measure is to know” perhaps most appropriately belongs to Lord Kelvin and a search …

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Personalized Medicine: Making It All About You

Earlier 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 …

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Multiple Sclerosis: Sustaining Care, Seeking a Cure

Our 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” …

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ALS Awareness 2010: A Four Year Journey With Our PALS

Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care.  Together, we have come so far as a community in making those goals, those dreams happen.  Today, to close out ALS Awareness Month, we want to honor that journey by highlighting some of the milestones you as a community have achieved. As many of you know, the journey started when PatientsLikeMe was inspired by Stephen Heywood, a young man diagnosed with ALS when he was only 29 years old. His brothers Jamie and Ben, and long-time friend Jeff Cole, built PatientsLikeMe and its flagship ALS community to help Stephen and other patients like him. After four years since launching the ALS community, more than 4,500 of you – our PALS – are still sharing your data and experiences to help others. Along the way, we’ve lost some of our friends, including Stephen, but their contributions live on in the data they’ve shared with us to help further the …

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PatientsLikeMe – Out & About and OnCall

The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare.  You may have heard about our executives at industry conferences, government hearings, or even on TV.  Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences. Watch the latest business video at <a href=”http://video.foxbusiness.com/” mce_href=”http://video.foxbusiness.com/”>video.foxbusiness.com</a> Earlier in March, we launched our PatientsLikeMeOnCallTM podcast series to bring to you our leaders’ perspectives on topics that impact you, the patient, and the healthcare industry as a whole.  We kicked off the series with Ben’s interview regarding Fast Company recognition.  You can check out that one and the rest of our podcasts on iTunes or click on the links below to start listening to a specific interview.  As podcast host Aaron Fleishman says, “thanks for stopping by and listening and we’ll talk to you next time.” Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis Listen | David S. Williams III …

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Manage your epilepsy like a PRO

Ever wonder how epilepsy affects the patient — the whole patient? A patient-reported outcome (PRO) is a questionnaire commonly used in the clinical world to asses a patient’s quality of life (QOL) for research studies. Most of the time patients never get to see their test results, much less see them plotted over time. That’s a shame because many of the best PROs were designed with the help of patients talking about their condition in their own voice. Patients in our epilepsy community can now access a series of PROs to help understand the effect of their disease on everyday life and have a voice in real-world, real-time research. The best part is that once they’ve completed the questionnaires (which should take about 20 minutes) they get to see summary findings of how they compare to other members in the community, plus a summary of their overall physical, mental, and social quality of life is displayed on their profile and their patient icon. This is an ambitious project; we’re looking to get data from thousands of patients with epilepsy at 3 distinct time points. Through this shared goal for the community, patients are pulling together and encouraging one another to …

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