Updated Thoughts on PatientsLikeMe

I have a previous post about PatientsLikeMe, but I importantly did not test creating an account until relatively recently.  I have been continually improving my habits in terms of taking more time to critically assess results and question prior assumptions (in addition to realizing that I may have not had the best title for that previous blog post, in retrospect), so I thought there would be value in providing an updated perspective on this free website.

I have genomics / medical data publicly available to download on my Personal Genome Project page (for hu832966) and I have what I would consider a partial electronic medical record on my PatientsLikeMe page (which I think is an excellent resource for sharing and learning about patient experiences, with the requirement that everybody who participates be completely open; however, you have to sign in with a free account to view my profile).

For those that currently don't have PatientsLikeMe accounts, I thought I should describe a few of my experiences (from the perspective of a patient):

I have taken Citalopram at doses of 20 mg and 40 mg (and 0 mg, during intervals to test the continued benefit of the medication, when my overall stress levels were lowered and/or I learned better cognitive strategies to manage stress).  While it makes quick analysis more difficult, I think being able to see the details of people's experience can be important.  For example, I thought it was interesting that my body's reaction to the medication seemed to change over time (each time I went back on the medication, I think the side effects were more subtle, even though I think the severity of my initial symptoms also gradually improved over time).  If this is in fact true, that would indicate some resistance / reaction that could not be completely captured from studying germline variants (if you are focusing on using DNA genotyping/sequencing for medication guidance), such as somatic variants, epigenetic modifications, etc.

I also like that PatientsLikeMe provides scores for both effectiveness and side-effects (and I admittedly created a PatientsLikeMe account because some plots in the "Health Communities" in 23andMe reminded me of what I had seen for PatientsLikeMe, even without previously creating a PatientsLikeMe account).

On the positive side, I have seen multiple neurologists, and I had previously not really found any of the previous migraine medication that I took to be helpful.  However, my most recent neurologist prescribed me indomethacin, and I found that to be very helpful.  I wrote a positive evaluation for that migraine treatment, and I was surprised to see that this was a relatively rare treatment for migraines.  So, if people found commonly prescribed treatments to not be helpful, I think this might be helpful in brainstorming alternatives.

I also reported 3 negative evaluations for drugs where I experienced moderate-to-severe side effects.  I noticed that severe side effects were self-reported for these drugs among 9-14% of members in the Community Reports (9% was comparable to other drugs that I checked, but the drug for which I had the most severe side effects in 2018 had a the highest severe percentage of 14% and qualitatively most frequent reports that seemed similar to by own experience).  That said, the most commonly prescribed migraine medication (which I never tried) had a reported severe side effect rate of ~20% (so, it seems to me that a self-reported "severe" side effect rate of 5-10% is normal, but 15% or 20%  with hundreds or thousands of patients may be kind of high).  That said, I want to be very careful about being too negative about something that is not my area of expertise (even though the idea of something being helpful for some people and harmful for others seems relevant for genomics research).

Going back to the topic of my anti-depressant (for anxiety or depression, depending upon the time-frame of my treatment that you are talking about), the current maximum recommended dosage of Citalopram is 40 mg (with 60 mg now being considered unsafe), and that would match my own expectation (although for slightly different reasons - I had to drink coffee instead of tea due to extra drowsiness at 40 mg, and I am currently on 20 mg instead of 40 mg).  I can also see a 2016 indication from the FDA that 20 mg is the maximum recommended dose for individuals greater than 60 years of age (so, the maximum recommended dose is currently lower for older individuals).  You can also see more information about this drug in the 1998 drug approval package from the FDA.  To be clear, I am very grateful for the availability of Citalopram and that has made a huge difference in my life, but I think this is something that may be worth discussing more (and I would probably also benefit from understanding better).

There has even been Washington Post article describing a partnership between PatientsLikeMe and the FDA to help with drug reporting (I saw this in a recent e-mail from them, but the article is actually from 2015 - still, it is good to know other people probably have at least somewhat similar thoughts).  While they didn't mention PatientsLikeMe, I think this was also related to the topic of a more recent announcement regarding patients reporting "real-world evidence."  You can also report adverse events to the FDA through MedWatch.

Update Log:

3/9/2019: original blog post
3/26/2019: changed link in 1st paragraph (and added another link in that sentence).
6/28/2019: add MedWatch link