3 things to consider when using third-party sites to find vaccine

FRANKLIN, Mass. — Kelly Loftus has a knack for finding open vaccine appointments online.

The Franklin school teacher knew she could help people who weren’t as computer-savvy, so she created the Facebook group, MA Covid Vaccine Scheduling.

The group now has 390 members. Loftus said she’s helped more than 100 people get the vaccine.

“I did the Facebook group so I could easily get in touch with people. If I book 20 appointments at one time I can just tag everybody there,” Loftus said. “Also, it’s kind of a good place for people to say, ‘Oh, Kelly just got me an appointment and it was legitimate.’”

In the first few months of the vaccine rollout, a glut of third-party sites offered to guide people through the frustrating process of booking an appointment.

Many of the sites are run by volunteers who ask for personal information, including names, birthdays, addresses, phone numbers, emails and health insurance information.

Loftus said she understands the process can make some uneasy.

“A couple of people have said, ‘Where does this go?’ and I say it just comes to me, then I delete it,” she said. “Yes, I am a total stranger who is willing to help people and I’m happy to do it, but I want people to be able to trust that I’m legitimate and I’m not just trying to get their information.”

“It comes down, I think, to a matter of trust,” said David O’Brien, Assistant Research Director for Privacy and Security at Harvard University’s Berkman Klein Center for Internet & Society.

“Looking at this in the best light, this could be a situation where you have websites that are trying to do something good for people and they don’t mean to do harm,” O’Brien said.

But once you go outside of a government-operated website or the healthcare system to find the vaccine, O’Brien said it’s hard to guarantee your information will be protected.

“Be discerning, check out the website, do your due diligence, and think about whether this is really for you,” he said.

O’Brien recommends always asking to see a company or group’s privacy policy. If they don’t have one, ask them what they will do with your data and when they will delete it. And never hand over your social security number or any credit card information. That is not required to get a vaccine.

If your information falls into the wrong hands, O’Brien said it could be gold for somebody trying to commit insurance fraud.

“There are options right here in the Commonwealth of Massachusetts where you can go to the state website and do the sign-ups there. That’s probably going to be your best bet in terms of accountability,” O’Brien said.

Diana Rastegaueva said she created the non-profit website MA Covid Vax Help because of the “poor state of the Massachusetts vaccination system.” She considers her website an alternative for people who are leery of social media.

“Personally, one of the reasons that I formed MA Covid Vax Help…was to avoid the anonymity of Facebook,” Rastegaueva said in an email. “Facebook is not a secure platform for sharing information and it is far too easy for bad actors to enter the system in the guise of being helpful.”

The for-profit company Dr. B said more than 2.2 million people have turned to its website to find unused doses of the vaccine. Dr. B is not a healthcare provider, and therefore not regulated by HIPAA, the Health Insurance Portability and Accountability Act.

A spokesperson said Dr. B is currently “building HIPAA-complaint software.”

“Patient data is encrypted…and is stored in a secure database in an isolated network, not accessible from the outside world,” the spokesperson said in an email. “We do not share data with anyone external - even providers - until a vaccine is accepted by a patient.”

Loftus said she’s not out to make any money off her Facebook group, she just likes the feeling of helping out.

“I feel gratitude and I’m happy that people are getting vaccinated. I mean, that’s what I get out of it. Hopefully some normalcy in the future,” Loftus said.

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