When the patients shares their health information and nurses pick up on it


I see this a lot-- patients (or in my case parents of patients) who have been through a long ordeal will have websites put up where they can share progress and updates on the health issues. Oftentimes they are still inpatient, and many of them will spend months on the unit before being discharged.

I have seen nurses post links in facebook to these public sites and share them with friends. They never post anything about the patient's health status themselves. It is usually something like, "Please pray for this little guy" or "So glad I get to work with this sweet girl."

I was given a tshirt by one family who was selling them to raise money for their child's cause. I was their primary nurse. I only wear the tshirt to bed, never in public because it has their name on it. I have seen nurses have decals on their cars with the child's cause on it, made up example: "TeamAnnie: find a cure for mito." I have seen a couple of nurses wear buttons or rubber bracelets with the child's cause on it, again example "Team Annie" or "Pray for a Cure for Jacob."

I have also seen patients themselves put up "Team Annie" type things on their doors, or the hospital will celebrate a patient's birthday with "Happy Birthday Jacob!" sign on the door.


jadelpn, LPN, EMT-B

51 Articles; 4,800 Posts

Their hearts are in the right place. And hopefully with parent's support they are posting--

Many hospitals have policies regarding social media, other "advertisement" type media, and perhaps a review is in order. The worst thing to happen would be that a nurse find out and be disciplined not realizing they are breaking any rules. And they may not be--it takes a lot of different identifying characteristics to be a violation per se....but I am no HIPAA expert. But my line of practice is different, bless all of you for doing what you do with kids every day....



905 Posts

If the parent is sharing the information I get why some would think it was okay to share it on social media. Would I? No but it's not the worse offense HIPAA wise I have heard of. The parent is putting the information out there so clearly they want people to see it/talk about it/get involved.

MunoRN, RN

Specializes in Critical Care. Has 10 years experience. 8,002 Posts

It's important to remember that when a parent shares something on facebook about their kid, the parent is sharing that information. When a Nurse links to information about that kid on their facebook page, that's a situation where the Nurse is sharing information, not the patient or their parent. It's not necessarily a HIPAA issue, but then again HIPAA is just a small portion of what you're expected to adhere to and/or what can get you fired.

KelRN215, BSN, RN

Specializes in Pedi. Has 15 years experience. 1 Article; 7,349 Posts

I've encountered things like this a LOT... as a fellow pedi nurse. I would never do that and I don't list parents of patients as facebook friends even if they ask me.

There is a big difference between parents sharing their child's information (which they have the right to distribute to whomever they please) and nurses sharing a patient's information. If, for example, a parent wants to share information about their child with everyone they went to high school or college with, that's totally up to them. If that same person called the floor looking for information about the child, it would be the nurse's obligation to say that she cannot share any information with someone who is not legally entitled to it.

I've seen nurses share patients' obituaries on facebook and I think that's wrong too. It's out there on the internet for everyone to see, but it just feels boundary crossing to me to share it with everyone you're connected to through facebook.

Now, here's a situation that I recently encountered. I live in Boston and cared for people who were injured in the Boston Marathon bombings. Several of these patients had their stories published in various news outlets and appeared on various news programs. Some of these programs were broadcast nationally and these links are available for the public to see. I still think it would be wrong of me to share anything like that on facebook. Same thing applies to parents' facebook pages, caringbridge or carepages sites. I don't even like "liking" a patient's facebook page because then anyone that I'm friends with can see that I liked that page.



Specializes in L&D, MB, AP, Nursery, Triage, OR, MedSur. 8 Posts

I would think that posting a short note saying that you're praying for them, or something to that affect, would be OK. However, it would be a HIPAA violation to "share" or "link" that web page or site to anyone else. In the first situation, the PARENT posts any private info & decides WHO has access to that info. In the second situation, the nurse is sharing info with people the parents may not even know.... Even if the nurse's heart is in the right place, it could get you into trouble. - But, the best policy is probably not to post at all though. So many hospitals have such strict policies about social media that it might violate a policy even if it doesn't violate HIPAA.

NicuGal, MSN, RN

Specializes in NICU, PICU, PACU. Has 30 years experience. 2,743 Posts

Most hospitals, if not all, have social media policies. Also, you have to be careful with professional boundaries.


Eyeknit, ADN, BSN

Specializes in NICU, NSY, LD/OB. Has 13 years experience. 11 Posts

As NicuGal and others pointed out there are more ways to be wrong than simply being in violation of HIPAA.

HIPAA - is strictest in reference to private information you receive in the course of your job, less clear and may not apply at all to information parents post publically on facebook, or in the newspaper for that matter

employer policies - vary widely, read the policy that applies to you

professional boundaries - your board of nursing may have something to say

personal ethics - keyword, personal!

For example, HIPPA would not be violated by you clipping a funeral notice from the newpaper and sharing it as is, without adding information you know from your job - don't add "remember the sweet BPDr from Bay 2? So sad!" and share that. The clipping itself was from the PUBLIC NEWSPAPER and doesn't gain any special right to privacy by being touched by a nurse. The key here is to not add information.

As to social networking, good luck with figuring out what is safe without bumping up on the next category - employer policies. To my mind the same logic as a newspaper should apply to facebook - if you set your posts to "public" or even to "allow friends to repost" then you have given consent for the info to be re-posted. In this I am disagreeing with CBabyNurse. The privacy policy on facebook is perfectly muddily clear that public means public! Again, without adding ANYTHING. (Even " I loved taking care of this sweetie!") Add something you know from work and you are in violation of HIPAA. Some employer's social media policies simply forbid any use of social media with a patient. So beware!

My personal standard is to never "link up" with someone I only knew from work. Even the long termers - if I only know you because I was your child's primary, you get added to my prayers but not my Facebook. If you give me a t-shirt I will wear it. I will just say "this is a cause I support" if asked what the t-shirt is about. If I meet you later in church and you become a friend, I never speak publicly (including on facebook) about the former professional relationship. This is the hardest to rule to understand and follow - I use this trick to make it clear and avoid the "where's the harm?" rationalization : If I had been your nurse at an STD clinic, would I bring it up now over coffee with the knitting group? No? Well then, I don't need to bring up that I was your baby's nurse. Instead, I use the good old standby intro "I hope your family is well!" This approach validates that I know them, recognize them, and care about how their sick family member is now doing and allows them to decide if they want to talk about it at all.

The most common violations I see are violations of professional boundaries that don't reach the level of HIPAA violations. But that is probably because I don't work in STD clinics. :-) Where I work it seems patients' parents are almost always happy to befriend the nurses.

tewdles, RN

Specializes in PICU, NICU, L&D, Public Health, Hospice. Has 31 years experience. 3,156 Posts

My thought is that there is no problem with this activity at all.

They are only responding to public requests for assistance in a health tragedy.

Nurses, as a general group, tend to be compassionate, giving, and involved in their communities.

Many communities and towns, especially the frontier towns, honor some of the women who served them as nurses and all around good people.