Case Presentations on Google+ and Facebook?
Last week, I wrote an entry about how a French colleague organized case presentations on Google+. I said that based on the very simple privacy settings of Google+, it can be useful for such purposes. Then I received a comment from Aitor:
Hi, in Spain we’re using also Facebook for that kind of case-presentations. There’s a group called Med&Learn where several cases a day are uploaded. Since the group is closed I send you an screenshot but without names or avatars.
I’m also into an other group of medical students on Facebook where we talk about our preparation for the Spanish USMLE (called MIR) and we share cases we see in our daily medical practice or that we found on the Internet.
I just asked to be a part of this group and will publish more details later.
On facebook, there are many and active ENT groups as well, I wrote a blogpost about them a month ago (http://enthouse.blog.hu/2011/10/12/a_nagy_facebook_hatalomatvetel).
The biggest is the “ENT Today” group (http://www.facebook.com/groups/enttoday/) with more than 1500 members, and for example on ORL – HNS Union (http://www.facebook.com/groups/ORL.HNS.Union/), there is a strict weekly teaching program to cover all the fields and subspecialities of otorhinolaryngology.
Personally, I think this is a form of publishing and I think it would be best to ask patients if they were happy for their story to be shared.
But there is now way the patient can be identified through these case presentations.
Is it possible that if the patient came across these sites tha they would recognise themselves, even if no one else would know them? If so, then ask permission.
I’m just asking: if that specific patient can recognize him/herself, but nobody else, does it break regulations or laws?
Well, I’m hoping that we are going beyond laws here to what is ethically right. The Facebook group has over 1000 members now. Not all members are medical professionals. If I joined how would my identity as a registered health professional be confirmed?
In the Google plus account, is information that could identify a patient being uploaded eg identifiers on the CT scan? Do regulations allow patient identifiable information to be held on a google server? Or Facebook’s servers?
Of course all of this could be explained to the patient and their permission/consent obtained.
AM
You must be right! I thought as long as we make sure no patient can be identified based on these case presentations, it works just fine.
We have had a private mailing list for years for our online support group. Each new member has to give a reason to join. I moderate. Many hundreds of members. Group now hosted on Yahoo. Very strong and secure community.
Thanks Tess,
I’m all for patients sharing their own stories – including in public if they’re fully informed- but the issue here is health professionals sharing patient information without their knowledge or consent.
AM
I don’t think patients will object to HCPs discussing their care, if consent is obtained in advance, personal ID details are removed and the group membership is tightly controlled and comments are moderated. I presume the purpose of the group is to improve patient care and quality of life.
Hi Berci,
Here I’d be reluctant to post and real patient’s story, even if it were “doctored,” because the laws for patient privacy are very strong. I did use a Google group with my students this year, but it was for sharing public domain stuff and formally-published cases. If I were to write up an individual patient’s story now, even for an academic journal, I’d want to get informed and written consent before publication.
I’d like to discuss this with you in more depth at some point. Best, Elaine
Thanks Tess. That was my point. I think we’re moving to time where patients righly might expect to be informed if their case is being discussed elsewhere.