Health Data Privacy

In January, our firm conducted a national online survey of voters for the Council for Affordable Health Coverage, focusing on voter attitudes toward health care generally and privacy of health care data specifically. In some ways, January was a lifetime ago. For that very reason, however, the results set a baseline of attitudes regarding health care data.

First, the results show that, even before most voters had heard of coronavirus or thought about a global pandemic, health care was the top issue tested despite the survey being conducted the week of missiles being fired in the Middle East. Overall 80 percent of voters said health care cost and access was the single most important (28 percent) or a very important (52 percent) issue, surpassing jobs and the economy (79 percent, including 23 percent single most important) and national security (76 percent, including 24 percent single most important).

At that time, voters were not particularly focused on privacy, with just 58 percent saying they remembered signing a HIPAA form at a doctor’s office. Among that subgroup, just 22 percent said they paid a great deal of attention to the form, while 43 percent paid some attention, 24 percent paid not much attention, and 12 percent paid no attention at all. Voters did care about access to their personal health information through a smartphone or computer, with 33 percent saying it was very important and 40 percent saying it was somewhat important; that was particularly important for voters 18 to 34 (44 percent very important and 39 percent somewhat important).

Voters in January were notably more concerned about their financial information being stolen (40 percent very concerned) or their purchase history and credit card information from an online retailer (37 percent) than about their health records (27 percent), which was on a par with personal data and posts on social media (28 percent).

Particularly relevant now, in Particularly relevant now, in light of Apple and Google’s joint announcement that they would develop software to help trace the spread of the coronavirus, is that 81 percent of voters said technology companies should not have access to personal health care information. In fact, a majority of voters (58 percent) said medical researchers should not have that access, putting these responses potentially in conflict with the efforts to combat a global pandemic. How the medical community, governments, and tech companies address this tension will go a long way toward charting a course to conquering coronavirus.