HIPPA Violations

Shew. it’s taking me a long time to finish this blog post.

Online and in real life, I have spent a lot of time sharing my medical diagnosis of endometriosis and my fight to find answers before it was discovered that I had endometriosis.

I’ve spent hours and hours speaking to women that have similar symptoms as me, and are struggling with the decision of surgery or no surgery.

I have spent hours talking to women who are about to or have just met with my surgeon. Discussing what I experienced; what were my symptoms, what was my recovery from surgery like?

I was very open about my struggles to get answers, my struggles with doctors who weren’t listening, my issues with a doctor who took me into surgery to remove ovarian cysts and never touched the ovarian cysts and then, even though I had extensive issues in my pelvis (like my ovary being stuck to my pelvic wall) said that everything was OK and “my uterus and my ovaries were normal.” I had a giant endometrioma on my ovary. It was certainly not “normal.”

But a year after my hysterectomy and endometriosis excision, I started getting really strange phone calls and emails. Phone calls from mental health and rehab facilities that were concerned about my well-being and my substance abuse problems. To which I responded with, “I’m sorry. WHAT?!” They stated I had done a self referral online and inputted my insurance information to their website, and I was approved for any type of inpatient or outpatient treatment. I was SO CONFUSED. I had no idea how these people had gotten my name, my address, my phone number, my email address and my insurance information. The things they told me that I entered onto their website were terrifying. I was concerned about someone coming to my house to take me away.

These emails and phone calls continued and I wasn’t the only one. Another person who I’ve worked with in the past, who lives in my neighborhood, also is getting these same types of phone calls.

Thankfully, when you enter things onto websites, IP addresses are always trackable. I spoke to one of the facilities and I asked where this information came from. Did they have the IP address? And they did. The emails were coming from the hospital. An employee at a hospital (I had never been seen at this location) had taken my information and this other person’s information and had put it onto these websites.

So now what?

The coordinators I talked to from these facilities, were horrified and embarrassed. They could not believe that an individual would be so sick to enter in these kind of things about a perfectly healthy human being. To waste their resources on somebody who was not struggling, was awful. They were absolutely disgusted. There are so many people out there who are struggling with mental health issues, and this facility’s resources were being used trying to help me and now trying to track down the person that had done these hurtful things.

I have to tell you that when I first contacted the hospital, they were not interested in helping me.

Working in IT, I know how easy it is to see the log of people that have entered your EPIC chart- just look for the person not working at a location I had been seen at. After several days of calling and getting push back, I was thankful enough to have a contact that got me in touch with the head of the hospital’s security.

Once the head of this hospital system security got a hold of my complaint everything happened so quickly. There was an immediate investigation into what was happening to my chart and my information. Within 72 hours that individual had been fired from the hospital system for violating HIPPA rules.

We received letters, each of us that our charts have been touched by this person, stating the dates and times that our charts have been illegally accessed (HIPPA violations). Most of us got specific dates. I, on the other hand had so many violations on my account that they didn’t give me specific dates, they gave me a date range. Everything in my chart had been accessed. My lab results, my pathology reports, my insurance information, my medical conditions, my medications, my doctor’s notes… Every part of my medical chart had been accessed on countless occasions by this individual for over 13 months.

Ironically, this same individual had asked me once if “I was going to continue to cry about (my medical issues) on the Internet.” And yes, I do know who this individual is…

I’m still incredibly thankful to the hospital system for jumping in so quickly and helping us with this situation. But honestly writing this all down on paper and finally finishing this blog still makes me shake.

The fact that someone was in my private medical information for over one year without being caught is difficult to manage. The fact that this individual sent my information to so many places that are doing amazing things for people that really need help is disgusting.

The fact that this person is so obsessed with me that they continued for over a year to stalk my medical information and harass me is honestly terrifying. I don’t have any idea what would motivate someone to do something so deceitful and frightening.

I pray that this does not happen to anyone ever again. If for any reason you start to get strange emails or strange phone calls, make sure you know where your information is and who’s been accessing it.

I completely understand that by putting information out on social media, that you are susceptible to people who may want to harass you. The Internet can be a very scary place.

But I will continue to try to build awareness for #endometriosis. I will continue to share the information about what I’ve gone through in order to try and help other women that are going through the same situation. I will continue to “cry about it on the Internet” until endometriosis is no longer an unknown issue that women suffer in silence for years and years before being diagnosed.

I am an #endowarrior and I am proof that proper endometriosis excision works. My journey is not over, but I’m feeling pretty damn good right now.