Yes, it poses a privacy concern and yes, it's a great way to show the value of sharing data. I used a similar site a couple of years ago in connection with a medical condition of my own. The site was a wonderful source of information, especially for advice concerning the day-to-day challenges of dealing with my condition. However, I would strongly advise anyone participating in this kind of service not to disclose anything on the site that you would not wish to see published on the proverbial front page of a newspaper. The Privacy Notice on the patientslikeme website provides the same advice. They acknowledge that they may gather personally identifiable information and that they cannot guarantee the data will not be compromised. An additional risk in using this kind of site is that the participants are on the honor system. There is no accountability for the integrity or truthfulness of what people report. I would only use the web site to supplement my relationship with my personal physician.

Yes, it poses a privacy concern and yes, it's a great way to show the value of sharing data. I used a similar site a couple of years ago in connection with a medical condition of my own. The site was a wonderful source of information, especially for advice concerning the day-to-day challenges of dealing with my condition. However, I would strongly advise anyone participating in this kind of service not to disclose anything on the site that you would not wish to see published on the proverbial front page of a newspaper. The Privacy Notice on the patientslikeme website provides the same advice. They acknowledge that they may gather personally identifiable information and that they cannot guarantee the data will not be compromised. An additional risk in using this kind of site is that the participants are on the honor system. There is no accountability for the integrity or truthfulness of what people report. I would only use the web site to supplement my relationship with my personal physician.