S1, Ep 3: Jon Bigelow explores the fragmented regulatory landscape and future challenges with data privacy

Length: 29:24

Guest: Jon Bigelow, Executive Director, Coalition for Healthcare Communications

Host: Jason E. Carris 

Jon Bigelow is executive director of the Coalition for Healthcare Communication. The coalition membership includes medical publishers, advertising agencies, marketing firms, scientific communications firms, point of care content providers, and digital platforms.

As big data and data security have grown in the past decade, the federal government has been “reluctant to get involved,” says Bigelow, past president and current board member of the Association of Medical Media. He says many of the companies involved in data are monopolies, yet the government has “not taken the same anti-trust stance as it did previously with Standard Oil, the railroads, or Bell breakups.”

Companies that harvest and monetize data “have been allowed to self-regulate” as the government has, for the most part, played a “passive, hands-off role. But the anger has been building the past few years.” 

He notes concerns with security breaches and digital platforms, like Facebook, that have allowed the use of personal data for purposes the consumer never intended. “The Cambridge Analytica event was a big deal.”

Data privacy policy was largely driven by the European Union and its GDPR, which “essentially added more specifics to the definition of what is personal data, instituted a very rigorous opt-in mechanism, and provided, at least initially, severe penalties,” he says.  

In 2019, California passed the first sweeping legislation (CCPA) in the U.S. aimed at protecting consumers’ data. “It was very quickly designed legislation,” Bigelow says. “To this day, it is still being clarified by their Attorney General. ... It is enforceable as of July 1, 2020.”

CCPA improved mechanisms for consent, but has “more of an opting-out emphasis,” he says, “so that a consumer has the right to know what data is being collected, where it was collected from, what is being done with that data, by whom, and the ability to opt-out.”

The big problem is the potential for every state to create its own privacy law(s), which is almost “untenable” from an industry perspective. “The second big issue is the burden on the consumer/user,” Bigelow says. “You don’t really know what you are agreeing to… to think simply clicking ‘I Agree’ is consent is laughable.”

Bigelow does see light at the end of the tunnel, in terms of much-needed federal regulations vs. a patchwork of state laws. Despite the dysfunction in Washington, D.C., there appears to be bipartisan agreement that “one, something needs to be done to protect the privacy and security of individuals data; and second, it needs to be done at a federal level. This is one of the few areas where there is consensus.”

Medical media should take note of work from Privacy for America, an industry group attempting to establish broad principles for a privacy law, of which many of the principles are being used in the dozens of bills circulating the Beltway. The principles would act as federal guard rails, the same as safety standards for automobiles, Bigelow explains. Key pillars of the effort:

• Create a Data Protection Agency, staffed with experts and focused on data privacy.
• Define acceptable areas of use and ways of collecting data.
• Define approaches to data use that are unreasonable.

When asked about the privacy questions the coalition’s membership is asking: “For medical publishers and media placement firms, the big issue was with the Colorado legislation. … Advertising agency concerns were on the cyber security side, in terms of who is liable when data is breached. … Scientific communications firms are concerned with the use of algorithms to try to discern patterns in the data that might not be visible. Example: identify patients with a rare disease and being able to target communications to them or include them in a clinical trial. … The publication planning world is very much under pressure to get all clinical trial results into the literature very quickly, including negative results, and include full data sets. There is a lot of concern whether, in fact, they can put the full data sets in the public purview.”

Bigelow says he thinks the government’s view of data as a “public good” is changing for the positive, even though it might narrow an individual’s right to privacy. Whether it is Google and Apple tracking individuals’ movement during Covid-19 or clinical trials for rare disease