Eastern Health privacy breach names patients who suffered pregnancy and infant loss

A Mount Pearl woman sayschanges are needed to ensure an Eastern Health privacy breach that exposed the names and email addresses of people who have lost a baby doesn't happen again.

"It's fine and dandy to apologize and say you're sorry, but there needs to be some actionable items that goes along with that as well," Rhonda McMeekin told TheSt. John's Morning Show.

McMeekin'sfirst child, a girl named Everlee, was stillborn at full term in 2013.

On Monday, she was talking with her health-care provider when she realized that a mistake had been made by Eastern Health'sPastoral Care and Ethics Office.

Talking with her doctor on what was also Pregnancy and Infant Loss Awareness Day McMeekinbrought up an email she'd received from the pastoral care office reminding her of the upcoming Walk to Remember, which commemoratesthe day.

That's a real kick in the face to some people.- Rhonda McMeekin

As she read the email she realized she could see the names and addresses of the other recipients copied on the email.

"When you take into consideration that some of the people on that list had not been open about their loss, that this was their personal health information that was now public to 78 other people, that's a real kick in the face to some people," she said.

Eastern Health apologizes

The health authorityconfirmed the privacy breach to CBC News, and said they apologize to the 79 people affected by it.

"Eastern Health is in the process of disclosing to all the individuals involved and will work to respond appropriately according the Personal Health and Information Act," the statement read.

"We are also working to strengthen our consent process to prevent this from happening again in the future."

But McMeekin said that when she initially made the pastoral care office aware of the mistake, it wasn't taken seriously.

Who else has it happened with?- Rhonda McMeekin

"I have to be honest about it, Ifelt kind of dismissed with my concerns," said McMeekin, who said she was told it was a clerical error and that the email would be resent.

"Iwasn't happy with that, because that's obviously a huge mistake that's happened and if it's happened with this group, who else has it happened with?"

McMeekinsaid it wasn't even the first time the same mistake had been made with this same group of recipients.

When she searched her email later Monday to send a copy to Eastern Health's privacy office, McMeekinfound that the names and email addresses of recipients were also visible on the Walk to Remember email the pastoral care office had sent in 2017.

Continued stigma over loss

Eastern Health's privacy office did take her concerns seriously, McMeekin said, and she received an email of apology from pastoral care later in the day on Monday.

However, she said that what she really wants to see is education for staff to ensure the mistake is not repeated, especially given that ithas happened more than once.

"The apology is a nice gesture, for sure. You can't take back the information that's already been put out there,"McMeekin said.

"But Ithink what would really satisfy me is to know that there's been some education provided to that office and to the people that were kind of involved in the scenario yesterday, to know that it's not going to happen again."

The privacy breach is especially concerning considering the vulnerability of the people included on the email list, she said.

McMeekinrecognized several names from people in a Facebook group for parents who have suffered pregnancy or infant loss, she said, but she also recognized the names of people who had spoken to her privately and were not otherwise open about their loss sometimes not even to their families.

Some people can't live under that grief and can't live under that stigma.- Rhonda McMeekin

Some people choose to keep their experience private, in part because of the stigma and judgment still attached to pregnancy loss and infant death, she said.

"I have two beautiful, healthy living boys but Istill have a daughter who died, and no matter how far I've moved beyond my loss in terms of time there's not a day that goes by that Idon't feel like people look at me as the girl with the dead baby," McMeekin said.

"I'm OK with that, I've made peace with that and I've chosen to channel my energies into helping other people like me. But some people can't live under that grief and can't live under that stigma."

This year's Walk to Remember is scheduled for 2 p.m. Sunday in Bowring Park in St. John's. Everyone who has experienced pregnancy or infant loss is invited to attend, McMeekin said, and siblings and living children are also welcome.

With files from The St. John's Morning Show.

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