{"id":16451,"date":"2014-07-23T10:58:44","date_gmt":"2014-07-23T14:58:44","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=16451"},"modified":"2014-07-23T10:58:44","modified_gmt":"2014-07-23T14:58:44","slug":"communicating-the-experience-of-illness-in-the-digital-age","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2014\/07\/communicating-the-experience-of-illness-in-the-digital-age.html","title":{"rendered":"Communicating the experience of illness in the digital age"},"content":{"rendered":"

At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X<\/a> will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online.<\/p>\n

We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include as many people as possible in the process. You can check out our Storify<\/a>, which lists our ongoing series of blog posts (this one is the second — Pam kicked it off<\/a> on her blog last week.)<\/p>\n

I thought I’d share some historical context. Because really, none of what we plan to discuss is new. It’s ancient. People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we have the ability to expand our networks, inject more data and background resources into the conversation, and then archive them for later searching or other use.<\/p>\n

For example, in 1999, Tom Ferguson, MD, fielded a small-sample survey of people who were using online health discussion forums, asking them to rate the resources available to them for 12 dimensions of medical care. His findings <\/a>were as follows:<\/p>\n

    \n
  1. Most Cost Effective
    \nOnline Groups–82.68 percent
    \nSpecialist MD–8.38
    \nPrimary Care MD–8.94<\/li>\n
  2. Best In-depth Information on My Condition
    \nOnline Groups–76.92
    \nSpecialist MD–20.88
    \nPrimary Care MD–2.20<\/li>\n
  3. Best Help with Emotional Issues
    \nOnline Groups–74.73
    \nSpecialist MD–9.89
    \nPrimary Care MD–15.38<\/li>\n
  4. Most Convenient
    \nOnline Groups–72.68
    \nSpecialist MD–14.21
    \nPrimary Care MD–13.11<\/li>\n
  5. Best for Helping Me Find Other Medical Resources
    \nOnline Groups–68.68
    \nSpecialist MD–14.29
    \nPrimary Care MD–17.03<\/li>\n
  6. Best Practical Knowledge of My Condition
    \nOnline Groups–68.48
    \nSpecialist MD–23.37
    \nPrimary Care MD–8.15<\/li>\n
  7. Best Help with Issues of Death and Dying
    \nOnline Groups–57.50
    \nSpecialist MD–15.00
    \nPrimary Care MD–27.50<\/li>\n
  8. Most Compassion and Empathy
    \nOnline Groups–52.46
    \nSpecialist MD–17.49
    \nPrimary Care MD–30.05<\/li>\n
  9. Most Likely to be There for Me in the Long Run
    \nOnline Groups–49.43
    \nSpecialist MD–21.02
    \nPrimary Care MD–29.55<\/li>\n
  10. Best Technical Knowledge of My Condition
    \nOnline Groups–47.54
    \nSpecialist MD–44.81
    \nPrimary Care MD–7.65<\/li>\n
  11. Best Help and Advice on Management After Diagnosis
    \nOnline Groups–34.59
    \nSpecialist MD–42.70
    \nPrimary Care MD–22.70<\/li>\n
  12. Best Help to Diagnose My Problem Correctly
    \nOnline Groups–11.35
    \nSpecialist MD–73.51
    \nPrimary Care MD–15.14<\/li>\n<\/ol>\n

    The Pew Research Center fielded similar questions in a national telephone survey in 2010 and guess what? We found <\/a>essentially the same thing, a decade later:<\/p>\n

    \"Pew<\/a><\/p>\n

    To bring it up to the present day, Matt Wilsey and Matthew Might recently co-authored a\u00a0commentary<\/a> in the journal of the American College of Medical Genetics and Genomics: \u201cThe shifting model in clinical diagnostics: how next-generation sequencing and families are altering the way rare diseases are discovered, studied, and treated.\u201d<\/p>\n

    Here’s an excerpt:<\/p>\n

    \n

    Until very recently, the fragmented distribution of patients across institutions hindered the discovery of new rare diseases. Clinicians working with a single, isolated patient could steadily eliminate known disorders but do little more. Families would seek clinicians with the longest history and largest clinic volume to increase their chances of finding a second case, but what does a physician do when\u00a0N<\/span>\u00a0= 1 or if the phenotype is inconsistent across patients?<\/strong><\/p>\n<\/blockquote>\n

    Answer: They search online. They find a blog post. They find each other.<\/p>\n

    People who were isolated, who probably would never have found the answers to their questions, are able to connect thanks to the confluence of new genetic testing, easy access to publishing platforms, and ever-improving search algorithms. It seems like magic, especially if you\u2019re new to\u00a0peer-to-peer health care.<\/p>\n

    It is cases like this one which inspired me, in 2011, to\u00a0write<\/a>, \u201cThe internet gives patients and caregivers access not only to information, but also to each other.\u201d It is also\u00a0why I\u00a0tell people, \u201cthe most exciting innovation of the connected health era is people talking with each other.\u201d<\/p>\n

    \n

    There is no such thing as over-sharing when you are pursuing hope\u00a0\u201clike it\u2019s an outlaw\u201d (to quote Afternoon Napper<\/a>). To say otherwise is to deny people the chance to\u00a0change the way we practice medicine<\/a>, for the better.<\/p>\n

    Now: what do you think? What historical examples of patient networking do you know about — offline or online? Has the internet changed things — for the better or for the worse? I’d love to hear what you think — join the discussion in the comments or on Twitter using the hashtag #medx. The conversation is never over!<\/p>\n<\/div>\n

     <\/p>\n","protected":false},"excerpt":{"rendered":"

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