Patient Privacy Discussion

It all started when...

And Swapnil pointed out these thoughtful replies:

Swapnil continued:

Criticism of use of 'fun' in case. Quick apology. We should all speak up if someone is being (usually inadvertently) like this. Maybe DM if you know them. And hope you have enough friends who will point out when (not if) this happens - and be graceful if someone points fingers at you, otherwise they will stop. Always be happy to receive criticism, makes you better.

Topf asked

Should he have deleted the offending tweet and reposted it without fun?

Cathy Quinlan replied

If it was me I would think that putting up an apology would be better than deleting. And not a politician's apology "sorry if you felt offended" but more I didn't mean to come across this way, similar to his reply above.

She then posed an important question:

Is it ok to put a patient's echo online?

Pablo:

Guess that many of us have shared a Lab result or an X-ray w/o any patient info.

Cathy is an absolutist:

Given that it would be attached to my name I wouldn't do that. Wouldn't use in a presentation either. Unless I had express permission from patient/family. I don't have an issue with others doing that I just wouldn't feel comfortable with it myself.

I would be mortified if a family saw it on SoMe and brought it up. It would feel disrespectful. Also, once it's out there who knows how someone else would use the info.

Swapnil

Good Question. Lots of people are putting photos, images, etc, online. It is truly fantastic for teaching/learning - a picture better than thousand words etc.

But some options I have seen - patient privacy:

• change some details: fake age, gender etc
• post months later
• don't post actual snapshot
• make up labs which are slightly different.
• Make case a bit abstract?

Get patient permission is the cleanest path. These days journals are insisting on written consent for case reports anyways. Also, what are you comfortable with? I was speaking to an ex-editor. He pulled a case report of a young lady with 'cretinism' - despite Patient consent. He wasn't comfortable with the fact that images could identify her...and the possible stigma with the diagnosis. So there's the legal aspect vs the moral & ethical.

Swap continues:

But look at @em_resus or @MedCrisis I learn so much from those images - and am happy they are sharing

Michelle Rheault with important safety tips (remember the job you save, may be your own)

And know your institution rules. Some specifically prohibit sharing images (even path) that are de-identified.

Omar Enrique Taco Sánchez points out that rare diseases can be identifying

Yeah, the “de-identification” can be accomplished by changing or omitting key patient details (e.g., names, insurance or Social Security numbers, date of birth, and photos), by avoiding the description of rare medical problems, and by not including specific time frames or locations without the patient’s consent... everyday I learn from somebody posting some "real" case on twitter

Silvi Shah reminds us about the HIPAA

With such strict Hipaa rules I would be very careful in putting patient information (even if deidentified ) on social forums

Cathy:

I'm a paed neph in Australia. There are only about 20 of us. Patients could easily see their case OR even worse, my patient could see another patients case and ask me about it!

Poyan Mehr is working at ground zero on these patient privacy issues:

I am putting the glomcon cases in a functionalized / modified way online as a general teaching tool. Any thoughts?

Cathy "Nothing about me without me" Quinlan:

Poyan, most patients will give permission if you ask. Then you're covered. Morally and ethically. If it was my kidney biopsy I would want to be asked. I'd have no problem if I was asked. But until I've consented you're displaying a part of my body without my permission. That feels wrong.

Telling a story is ok. A composite patient. I think. And has deniability.

Pablo Garcia another absolutist position

I would play it safe and I wouldn't share any kind of material on social media that could potentially identify a patient. Unless the patient signs a consent to indicate that I can share his/her case on to the social media. Changing labs, age, gender, dates, family history, social history, is a great idea.

Poyan is in a tight spot

Asking permissions will pretty much kill the effort. Near impossible with all these cases from all over. Like how to obtain and document permission etc.... I don't think anyone ever consented to the pathology images in text books. They are available to the public as well...

Cathy does not budge

I get that Poyan. I do. And I'm not judging. But if it was my tissue I'd want to be asked. And I always ask patients if they're ok with a case report/poster/presentation where they are even remotely identifiable eg a child with ARPKD (rare so identifiable) even if talking to docs.

As we all know people take photos of our slides and put them on twitter. Where our patients can see them. I'm paeds so perhaps I feel more protective of my patients?? And I'm not a pathologist somour perspectives may be different.

Swapnil quotes Jerad Gardner, a leading pathologist win Twitter

Here's a storify of the Pathology - AMA ethics discussion: