Just Where Is that Privacy Line?

(Originally published June 2015. Updated June 2020)

This week (2015) we were contacted by two major TV news outlets requesting interviews with advocates – one a national broadcast outlet, the other in Chicago. As we do when we receive these requests, we immediately alerted those Premium members who are on our Opportunities & Alerts notification lists so they could respond if they fit the profiles. In both cases, the media were looking to talk to APHA members – and even more so, client-patients of our members.

These requests came on the heels of a post in the APHA Discussion Forum expressing concern over problems that could be caused by having a Facebook page. The poster was worried that if a patient asked a personal health question on the advocate’s Facebook page, it would cause a HIPAA privacy violation, and she didn’t want to run that risk.

Then came an email question from a member: how can we, as advocates, claim we value client privacy, then turn around and expose them to the media? Of course, the underlying point to the question is about exposure for our own advantage, to promote our advocacy work.

Two great questions! And inspiration for today’s blog post.

The answers aren’t difficult to understand, but there are a few moving parts, as follows:

First, Regarding HIPAA

HIPAA’s privacy laws are written for “covered entities,” that is, people and organizations within healthcare who are deemed by the US government to be required to protect the privacy of their patients and customers. The US government defines covered entities as “Health care providers who transmit any health information electronically in connection with certain transactions, Health plans, Health care clearinghouses.”

Canada has a very similar, parallel privacy law, too, called PIPEDA, Personal Information Protection and Electronic Documents Act.

Discussions about whether or not private advocates would be considered as “covered entities” have produced the following:

  • We will not ever know FOR SURE whether we, as advocates, are considered covered entities until someday one of us is sued for a privacy breach and it is tested in the courts.
  • We have asked three attorneys whether they believe the law would define us as covered entities. Two said NO, we would not be so defined. One said YES – or at least there is enough gray area that a court would need to determine it.

We, as APHA, say – it doesn’t matter what the official ruling would be. Instead, if we always BEHAVE as if we are covered entities, protecting our clients’ privacy, then we will never get to a point where it would need to be tested in court.

So – since we know there is no official, governmental line in existence, we need to draw the privacy line ourselves.

Social Media and Privacy

The ability for us to exchange information, publicly, online does present a potential privacy problem. I can see where that question about Facebook comes from. But, there are a few easily understood reasons why such a post, by the patient, on Facebook or any other social media, would NOT be a problem for an advocate.

There is a big difference between the patient, him or herself, posting a question – vs – an advocate identifying a specific patient or client. Self-exposure is the client/patient’s doing – not the advocate’s. So the question posted would not represent the problem.

Where it could potentially become a problem for the advocate would be if any reply was also public, or risked becoming public, even if the patient himself exposed the reply.

That’s the key, then. Just don’t ever provide any semblance of the answer using that social media, not even with a private message. If you don’t provide any advocacy-related response, then you can’t ever be accused of violating privacy. Instead, if someone poses a personal question, ask them to contact you directly for their answer. Send your email address or phone number in a private message, or post your web address or AdvoConnection listing address on the public page, but don’t even hint at the answer they seek publicly. Problem solved.

Exposing Clients to Broadcast and Print Media

The second question – in response to the two broadcast media requests – is a little trickier, but it will still make sense to you.

The question is about yielding a client’s privacy to the media simply to be advantageous to the advocate. The answer to this is actually two pronged – the why and the how.

  • Why?

There are at least two reasons a client might be very willing to talk to the media.

Many media requests regard patients who have had trouble with some aspect of the healthcare system. Media might be seeking victims of a medical error, or patients whose insurance refused a claim, or felt as if their hospital bills were too high. These clients are often very happy to tell their stories; first, because they want the world to know they were wronged (and love exposing the perpetrators!) and second, because they hope others will learn from their problems.

Second – often clients are extremely grateful for the help they received from their advocates. As a result they are happy to talk about the great strides made by their advocates. They are the evangelists we talk about in marketing. They want the world to know how wonderful you are! These are the same people who will happily write testimonials about your work. By all means – ask them to do that!

(You may be able to think of other reasons, too – will you share them in the comments below?)

  • How?

Just like the Facebook postings described above, the “how” is very much about the client him/herself.

One of the marketing best practices we teach is to ask each and every client for a testimonial when your work is complete. Premium, directory-listed members should be adding these to their AdvoConnection listings at the end of each project. (See examples here.) These testimonials must be submitted to the directory by the client and not from the advocate. That means we know they are real even if we don’t make the person’s name public.

Among all your patient-clients, you’ll find a large percentage who will be thrilled to provide testimonials. They become those evangelists we talk about – wanting the world to know how well you served them.


It would also be good practice, then, to ask the client if they would be willing to talk to the media if the opportunity ever arose. Then note that in your files, so that when an opportunity arises, you only need to get back to them to confirm before you respond to the request.

The operative word there is ASK. The advocate’s request to the patient is always about ?would you willing to share your story publicly> ? rather than ?I?d like permission to tell your story. Then the discussion ensues. The decision on whether to move forward is always the patient’s decision.

By the way, media are often sensitive to the private nature of these stories. As long as they can talk to the real patient, they will usually cover the patient’s identity in any story they tell. However – important! – confirm their willingness to do so if that is important to your client.

Whether or not a patient will be willing to work with you and the media is more often about personalities than it is about the story itself. The personal nature of the diagnosis, age or even the patient’s culture may affect his or her willingness to participate.

You know your client better than anyone, and know whether you should broach the subject. And if you aren’t sure? Ask! Many will be flattered that you did, even if they decide against it.

Need help adding testimonials to your AdvoConnection Listing> Login and link here.


2 thoughts on “Just Where Is that Privacy Line?”

  1. This is great, Trish. We have struggled with this issue too…my PR person has gotten us several articles in newspapers and magazines, as well as on the radio…it has really boosted advocacy calls all over Chicagoland! When the paper requests a patient interview, I ask the patient myself if they would like to be interviewed (and yes, with pictures at times) Most of the time they say yes, but when they say it would make them feel uncomfortable in any way, I back off and tell the reporter it is a no go. The ones who have consented are my biggest cheerleaders and they LOVE to appear in the paper. The papers will not accept an alias, want everything to be absolutely true and accurate. Testimonials from clients themselves is WAY better promotion than anything we could possibly think up to market ourselves. It’s all about the patient to us. On FB and blogs, I always change names and specifics, as I do in the book I am writing, to protect privacy while still telling the truth through stories that can be checked out if anyone ever questioned us. Guiding principle: always ask before you share anything and get it in writing.

  2. This is great information Trisha. I had a print media reporter contact me in the SW Florida area just last week and I was able to explain the stance of the advocate re: client privacy. So, I’m hopeful they are now willing to back off the requirements of photos and full names if the client is interested in cheerleading for my business but NOT have their full personal information used. A balancing act for sure. I like the idea of asking the client during service evaluation if they’d be willing in future to speak. Will add to my best practices.

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