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PatientsLikeMe: how good a community site?


A site entitled PatientsLikeMe states its goal very clearly - this is a site for sufferers to share experiences and views, and with 240,000 registered users (or 220,000, the site lists two different totals) it clearly meets a need. How does it rank as an example of a community site?

<--break->I started by looking for a condition, which is where I imagine most users would start. I keyed Alzheimer's, and the resulting screen started with a definition of the disease, followed by a table:

Table of symptoms

This table seems quite appropriate for a site sharing users' experience of conditions and diseases. True, the symptoms are vague, and there is no way of seeing how the information was gathered to state "how bad it is" - how many users contributed to this table? More worrying is that "how bad it is" is immediately followed by “What people are taking for it” suggesting that for every symptom there is a corresponding drug. And what a drug! It would appear that people are taking “appendectomy” to deal with pain in Alzheimer’s. The last time I checked, appendectomy was having your appendix removed.

Immediately below this table is a second table, headed "What patients take to treat Alzheimer’s.” OK, so this table states the drugs you take to deal with the disease, as contrasted with the drugs in the first table that you take to deal with the symptoms - I would have thought there would be at least some overlap, but none of the drugs listed in the second table appear in the first. Mercifully, appendectomy does not appear in the second table at all.

This table appears to contradict itself. The first column states “treatments reported by members”, and clearly three treatments have been listed, but the last column states clearly each of the rows is based on precisely zero evaluations. There is no result at all for effectiveness or side effects. Should a table with no data be included on the site?

Clearly a major problem with this site is either a lack of sufficient users adding data to the site to make it statistically valid and/or a major lack of moderation. Creating a table with no responses for one of the major diseases of the modern world suggests a user base that is not participating sufficiently to be called a community.

Further down the page is another telling detail. There is what seems to be a helpful heading “Where do I talk to patients with Alzheimer’s?”, although on reflection this heading should surely state “How do I talk to patients...” or “How do I communicate with…” rather than “Where do I talk” - most users would I assume have come to the site because they have the disease themselves or they are close to someone who does. But then the lack of relevance goes further: the first post listed in the forum is “What to say to someone with Panic Disorder”, which does not appear to be relevant to Alzheimer’s at all, and is not listed in the top five symptoms earlier on the page.

I have every respect for a site that provides a means for sufferers and their families and partners to share experiences, but as a community, the site appears to me to have insufficient data in some tables, is poorly moderated (although it lists a staff of 12), and it looks as if insufficient thought has gone into the site design and wording.