And then of course there are the inevitable privacy concerns. Kinsa emphasizes that all data made available to the city is aggregated and anonymized. “None of the individual data goes to anyone other than that person,” said Mr Singh. “You have the data, and we’re really persistent with it.”
While digital privacy experts say these are important safeguards, they also point out that information about children and health is particularly sensitive. “It’s really important to weigh the benefits and needs of public health against the social or societal risks,” said Rachele Hendricks-Sturrup, health policy advisor at the Future of Privacy Forum, a think tank focused on privacy.
For example, even anonymized data can sometimes be re-identified. “Even if it turns out to be ‘A fourth grader at this school in this neighborhood,’ that might narrow it down,” said Hayley Tsukayama, a legislative activist at the Electronic Frontier Foundation, a digital privacy group. “It doesn’t take a lot of data points to identify something new.”
The data, aggregated by zip code, will also feed into disease signals that Kinsa makes available on its public HealthWeather map. The company sometimes shares this information at the postal code level with pharmacies, vaccine distributors, and other companies. For example, Clorox used Kinsa’s data to determine where to target its ads. (Lysol won’t have special access to the data, says Kinsa.)
Both Kinsa and the city need to be transparent to families about how the data is used, stored and shared, and how long it is retained, experts said. City officials “are essentially putting their stamp on,” said Amelia Vance, director of youth and education privacy at the Future of Privacy Forum. “They need to make sure they are living up to parents’ trust that this program has been fully reviewed and is safe for their children and families.”
City officials will be closely monitoring how well the program is performing over the coming months, said Dr. Varma. How do families feel about the program? Is there enough intake to produce useful data? Can they actually spot outbreaks earlier – and slow the spread of disease?
“Our goal is to see if it really has the effect we hope in the real world,” said Dr. Varma. “It is also possible that the system does not detect anything conspicuous or unusual, but still proves successful because it provides people with useful information and increases their confidence that they have their children in school.”