Stem cell patients communities online – PatientsLikeMe showcase

by Alexey Bersenev on September 7, 2012 · 0 comments

in Uncategorized

A while ago I’ve called all “stem cell patients” to unite and share their experience. I think, it is very important. I’d like to highlight two major reasons for it:

  1. Patients will do a great community service for themselves, for the seekers of treatments, first of all.
  2. We (professionals) can not track results of “stem cell tourism” treatments, because clinics don’t report and provide any valuable statistics.

The best example of an online patient community is a web-platform PatientsLikeMe. In the last few years, stem cell treatments have become a common topic on PatientsLikeMe. So far, PatientsLikeMe has 22983 forum posts about experimental stem cell treatment. Based on treatment evaluation scales, implemented in their platform, we can now retrieve some statistical data. I was pleasantly surprised when discovered these data. Today I’m going to show you a few snapshots from PatientsLikeMe reports.

There are two categories of so-called “stem cell patients” – the first are the patients, who underwent treatment as “stem cell tourism” and the second are the patients, who involved in authorized clinical trials. Taking into account the length of clinical trials and time of official reports (publications), sharing patient’s experience in real time makes a lot of sense.

On PatientsLikeMe, patients share their experience via evaluations of treatments: estimation of benefits, reporting complications or adverse effects. The patients can make their evaluations public or keep it open only for community:

Let’s look at the first part of report – perceived effectiveness:


This table is interactive – you can get actual numbers and links to available evaluations by clicking on columns. As we can see, the most available data is from patients with ALS:

  • 39 ALS patients underwent stem cell treatments;
  • 9 of them evaluated a treatment;
  • out of all 9 available evaluations, 3 patients perceived effectiveness as “none”, 3 – as “can’t tell”, 1 – as “slight”, 1 – as “moderate” and 1 as “major”.

Not a lot of data, subjective, not very significant, but this is better than nothing. This is just a beginning!

The next part is side effects:

There were no severe side effects reported. Nevertheless, 2 cases required hospitalizations.

The final part of report includes adherence to the treatment, burden and cost:

The cost range is indicated per month.

The purpose of this showcase was the demonstration that “stem cell patients” online communities could be useful for both – patients and medical professionals. I’d like to encourage patients to join online communities and share their experience.

Stem cell treatments PLM report available: http://www.patientslikeme.com/treatments/show/36-experimental-stem-cell-transplant-side-effects-and-efficacy#overview

Screenshots originate from and posted with the permission of PatientsLikeMe.

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PS: The data, retrieved from patient’s communities online, do not provide an evidence for therapeutic efficacy.

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