Privacy concerns rise as more health data goes mobile during the pandemic

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Smartphone apps are largely designed to make life easier for users, from ordering food to tracking your sleep to logging a flight. With the increased use of these digital apps comes growing concerns about data privacy, especially at this stage of the ongoing COVID-19 pandemic, as more states begin to require proof of vaccination. to enter restaurants, cinemas or other places of entertainment.

Digital vaccination attestation services that offer proof of vaccination — sometimes inappropriately called vaccination passports — are now appearing in app stores so people don’t need to carry their paper vaccination card, but there is a question of how private the data compiled in these apps really is. East.

Laura Hoffman, AMA’s Deputy Director of Federal Affairs, recently discussed this issue and other emerging data privacy issues that physicians should be aware of in an episode of “AMA COVID-19 Update.”

There are various reasons why people should be concerned about the privacy of apps they use, including apps that collect health information. For example, many apps contain software development kits (SDKs), which are pieces of code that allow companies to collect data and share it with third-party apps. Facebook has been in the news due to privacy concerns as the platform has a widely released SDK that goes into a number of different apps and extracts user information without people noticing. account, Hoffman said.

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This data could be put to good use. For example, a group of people with a certain health condition might receive personalized advertising for an emerging treatment or drug for that health condition. Unfortunately, data can easily be used to segment audiences in negative ways.

“Privacy is so often thought of as this technical, corny, behind-the-scenes thing, but it’s really about people,” Hoffman said. “It’s a human rights issue. It’s a civil rights issue. Privacy gives people the autonomy to control who knows what about them. »

When it comes to health apps, Hoffman explained that most people don’t think the information they provide about themselves will ever end up in the hands of employers or insurers, which could have huge effects. for them and their families. Most people are unaware of SDKs and other app developer data sharing practices that result in the wide collection and dissemination of their health data.

“We want to make these kinds of apps actionable and functional for patients,” Hoffman said. “At the same time, however, we want to make sure that certain safeguards are in place.”

Learn how smartphone apps can and should protect users’ health information.

Hoffman said app developers and providers need to be more accountable for what information is collected and how it is communicated to users. To facilitate this effort, the AMA has developed “Privacy is Good Business: A Case for Privacy by Design in Application Development” (PDF) to help developers implement recommended privacy principles.

Learn more about WADA’s Health Data Privacy Framework.

A question for developers and users is how much personal information should be collected by a digital vaccine credential application. If the goal is simply to demonstrate that someone is vaccinated, it probably shouldn’t be necessary to include their mailing address or other personal identifiers, Hoffman said.

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She encouraged physicians to talk with their IT department or consultants to understand the privacy and security elements of the applications offered in their EHR ecosystem. Ultimately, physicians must be prepared to answer patient questions about how their practice or healthcare organization protects the privacy of their data.

“It’s about maintaining trust between doctor and patient,” Hoffman said. “We want to make sure doctors feel comfortable responding to patients and reassuring them that this trusting relationship exists, even if they choose to start using these apps.”

Get the latest news on the COVID-19 pandemic, vaccines and variants, plus more reliable information straight from leading experts and physicians with the “AMA COVID-19 Update.” You can watch each episode by subscribing to the AMA’s YouTube channel or the audio-only podcast version.

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