PatientsLikeMe goes wide

PatientsLikeMe opened up to every condition today.

From their press release:

Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old free online health data-sharing website was previously only available to patients with 22 chronic conditions (including ALS, Parkinson’s disease, HIV, depression, epilepsy, fibromyalgia, multiple sclerosis and organ transplants). In February, the company closed to new members and allowed its 100,000 members to test out its new design and upgraded functionalities, such as adding multiple conditions (or co-morbidities) to their health profiles and measuring their mental, social and physical well-being (or quality of life).

Click on the site and see what you think. Let’s talk about what this could mean — upsides, downsides, praise, critiques. Open thread below.

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6 Responses to “PatientsLikeMe goes wide”

  1. Susannah Fox says:

    Based on Pew Internet’s research, PLM stands to capture the attention (if not the membership) of 1 in 5 internet users in the U.S. That’s the percentage who have gone online to find others who might have health concerns similar to theirs.

    But look more closely at the data, particularly for caregivers and people living with chronic conditions:

    http://www.pewinternet.org/Reports/2011/P2PHealthcare/Part-1/Section-3.aspx

    Up to 1 in 3 internet users living with a chronic condition OTHER than the big 5 say they have looked online for someone like them.

    I’d love to hear from expert patients who have tested out PLM’s new site – what did you search for? What did you see? What do you think?

  2. I’ve long been a fan of PLM. I think they fill an incredible need. Only time will tell how much “ordinary” patients (not with a chronic disease) will share online, but kudos to PLM for making their services widely available.

  3. Susannah Fox says:

    I’m seeing some really interesting tweets about the change:

    @SeerGenius kudos to patientslikeme for adding race and ethnicity part of the demographic questions, now I’ll add it as a condition.

    @akroundtree How does PLM use member data?

    @stevemuse PatientsLikeMe opens – accepts any condition think Facebook open platform

    @hugooc GOOD: @patientslikeme expands to all conditions BAD: “Cardiomyopathy” too broad to be useful

    @THCBstaff Methinks that #PatientsLikeMe was a little concerned about growth of MedHelp, Diabetic (and more) Connects

    @adarowski The highlight of the @PatientsLikeMe update is that the site is now officially open to anyone, any condition.

  4. Joe McCarthy says:

    Fortunately, I’m not an expert patient – I say “fortunately” because I don’t have (or am not [yet] aware of having) any serious or chronic disease – but I have close second-hand experience with a loved one who is not so fortunate (and who I am hoping will be willing to co-investigate the new opening of PatientsLikeMe). In any case, I have been paying increasing attention to prospects for social media to improve the health of those who write and read about personal stories of experience, strength and hope.

    I cannot contribute meaningfully – or, at least, directly – to the question you posed, but I will share a link to a research paper presented at the ACM 2011 Conference on Computer Supported Cooperative Work last month:

    “It’s not that I don’t have problems, I’m just not putting them on Facebook”: Challenges and Opportunities in Using Online Social Networks for Health [Scribd], by Mark Newman, Debra Lauterbach, Sean Munson, Paul Resnick and Margaret Morris.

    I hope that more researchers and practitioners (including patients and/or providers) will share their related insights and experiences at next year’s conference (CSCW 2012), and if you’ll excuse a shameless co-promotional plug, this is a theme I elaborate on in an informal call for participation on the topic of social media and computer supported cooperative health care (which includes a link to the above-referenced paper as well as several other examples of related papers from CSCW 2011 and CSCW 2010).

    • Susannah Fox says:

      Thanks, Joe! I am already in love with that FB paper and I’ve only read the title & authors. And there is no such thing as a shameless plug that adds such value – you are welcome to post such comments any time.

  5. CaEthierrol says:

    Hi, I have been diagnosed with Meniers disaeas of the inner ear. One ear was lost to an acoustic neuroma so this is very exaerabeated. The neuronma ear lost hearing and balance so this is a very elaborate ase. Now my6 problem is more weith heqaring loss as my brain has learned to re-balance which had really debilitated me for 18 mos as it occured. I fear the total deafness as seems to b ehappening with Menieres. AAppreciate any responses and inputs

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