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Social Uses of Personal Health Information Within PatientsLikeMe (4 Aud 1000 Frost Massagli)
 

Social Uses of Personal Health Information Within PatientsLikeMe (4 Aud 1000 Frost Massagli)

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    Social Uses of Personal Health Information Within PatientsLikeMe (4 Aud 1000 Frost Massagli) Social Uses of Personal Health Information Within PatientsLikeMe (4 Aud 1000 Frost Massagli) Presentation Transcript

    • Frost, J. et al.: Social Uses of Personal Health Information Within PatientsLikeMe
      • This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team
      • Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com )
      • Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php
    • Social Uses of Personal Health Information Within PatientsLikeMe Jeana Frost and Michael Massagli 4 September 2008 Medicine 2.0: Social Networking and Web 2.0 Applications in Medicine and Health Toronto, Canada
    • Overview
      • This project investigates some ways in which patients respond to the shared use of personal health data in a specific environment, the PatientsLikeMe online community for persons with amyotrophic lateral sclerosis (ALS).
      • Identify and analyze patient-to-patient dialogues that referenced individual-level personal health data.
    • Overview, continued.
      • Qualitative analysis reveals a variety of commenting and questioning behaviors
      • Members referenced data
        • to locate others with particular experiences to answer specific health-related questions,
        • to proffer personally acquired disease-management knowledge to those most likely to benefit from it, and
        • to foster and solidify relationships based on shared concerns.
      • New developments
    • What is PatientsLikeMe?
      • An open, on-line patient community focused on specific, life-changing disease states
      • A patient-centered company creating new knowledge derived from the shared real-world disease experiences of patients
      • Our Core Values put Patients First in how we approach our community development and commercial interests
      • We fund PatientsLikeMe by selling data & responsible access to patients to payers, pharma, and medical device companies
      • Current disease communities:
      • ALS (PLS, SMA), Multiple Sclerosis, Parkinson’s, HIV/AIDS,
      • Mood (Depression, Anxiety, Bipolar, PTSD, OCD)
      Patients Symptoms Treatments Partners Research
    • How do you know what to do?
        • Patients will share private health information
          • Treatments, symptoms, outcomes
          • Insight, support, value
          • Over time
        • Patients have answers and data
          • What happens to a patient like me?
          • What are the best treatments & products?
          • What information do I believe?
          • How/where can I get good care?
          • How do I live the best I can?
      • Limited real world outcome data
      • Isolated knowledge on managing illness
      • Limited evaluation of doctors, services, medical equipment
      • Anecdotal data on alternative solutions
      • The reality that physicians don’t have all the answers
        • Together
      Alone
    • How does PatientsLikeMe work?
      • SHARE
      • Patients’ sharing detailed health
      • data is what makes our communities
      • special. Patients learn from each
      • other through sharing of traditionally
      • private data
      LEARN Patients learn about treatment options and what to expect from each in our Treatment and Symptom databases FIND Patients’ find other patients like them to learn what options are available for treatment. Patients then share information with their health care team
    • A Profile
    • How does PatientsLikeMe work?
      • SHARE
      • Patients’ sharing detailed health
      • data is what makes our communities
      • special. Patients learn from each
      • other through sharing of traditionally
      • private data
      LEARN Patients learn about treatment options and what to expect from each in our Treatment and Symptom databases FIND Patients’ find other patients like them to learn what options are available for treatment. Patients then share information with their health care team
    • Treatment entry
    • PatientsLikeMe charts the real world course of disease and how it impacts patients' lives Detailed Treatment & Symptom Information Shared Patient Experiences 3,500+ patients 550+ Symptoms 900+ treatments 17,000+ posts Individual Long-term Outcomes
    • A Profile
    • Ways of using comments
      • (1) targeted questions to others with relevant experience,
      • (2) advice and recommendations, and
      • (3) forming and solidifying relationships based on similarity
    • Peer disease management The first thing that I thought might be your Problem is malnutrition. Man, you’re losing weight crazy fast. I think you better consider getting Peg tube if you desire. They are easy to care for and are literally a life saver. What are your thoughts on this? ALS Community
    • The impact of a drug holiday in HIV Anyone who wants to see what happens on a 2 month drug holiday just look at my updated VL and CD4 count. After being taken off of old meds to track down some unwanted side affects. My VL spiked from undetectable up to 7,360 in a two month period. Having been on new meds for 28 days my VL dropped precipitously. As of last Tuesday 220. I must say also that a drug holiday is not what it once was. Not taking 8 relatively small easy to swallow pills a day just does not compare to not taking 30 giant rubberized stick to the back your throat pills a day. I just kinda feel like I am on a drug holiday all the time by comparison. HIV Community Drug Holiday
    • Using shared data to drive treatment decisions Before PatientsLikeMe: For years I had always taken just 10mg of Baclofen. I was told a long time ago by my old neuro that "too much Baclofen can cause weak legs". We'll yes, that maybe true but after 10 years, I probably should have re-inquired. whoops Then: I sign up here. Take a peak at what you guys are doing, and find out I don't take enough Baclofen to deal with my symptoms. Give the neuro a call, no problem, and much, much, better. MS Community Patient Dosages for Baclofen
    • Information Based Insights PatientsLikeMe is the main reason that I concluded I had been mis-diagnosed depressive, instead of bipolar, and just recently decided to try new medication. Mood Community
    • Peer adherence to medication regimens Request for help Personal Experience Solutions Results Thank you, guys, for your ideas. I just got my meds upped due to a sudden change in mood (in two directions, fun!) so we'll see. I've always been good about them so I hope this is an easier beastie to beat. Thank you again....
    • Can Patients Answer Clinical Questions as a Group?
    • A natural experiment on the effects of lithium in ALS 200+ ALS patients on lithium vs 2000+ controls (6 months post publication)
    • Testimony!
    •