One pillar of participatory medicine, as SPM co-chair Dr. Danny Sands often says, is access to our medical records: “How can patients participate if they can’t see what I see??” But a major impediment to free-flowing information is incompetence or malfeasance in protecting our data, which makes some people want to clamp down. Patients and participatory providers need our health information to be as secure and free-flowing as banking information … which is not perfect but it’s an industry where they take privacy seriously.
Charles Ornstein @CharlesOrnstein of ProPublica has a new piece today on the NPR “Shots” health blog, talking about some really heinous violations by immoral individuals and sometimes sloppy individuals, e.g. a doctor who gave his password to a temp employee. (Oy.)
Awareness is a first step in fixing problems like this. Technical wizards can’t design-out the weaknesses without knowing what they are, and activists for free-flowing data (like many of us in SPM) need to know the real risks of harm and embarrassment that happen when a system isn’t really secure. Security wizards say you can’t ever be perfect but you can surely design systems – and access – to be secure enough to prevent the malfeasance in these anecdotes.
Question for EMR experts: why do we not have systems that allow adding information without also allowing rummaging? Do systems allow different levels of access, or is it all all-or-nothing? When I was an admin for Salesforce.com we could give users many different levels of access, and that system starts out free. Is the same not available in Epic, Cerner, etc etc? (I’d welcome non-hypey answers from vendors or anyone, in comments.)