Frank Pasquale on Balancing Privacy Obligations and Research Aims in a Learning Health Care System:
Health information technology can save lives, cut costs, and expand access to care. But its full promise will only be realized if policymakers broker a “grand bargain” between providers, patients, and administrative agencies. In exchange for subsidizing systems designed to protect intellectual property and secure personally identifiable information, health regulators should have full access to key data those systems collect (once properly anonymized). Moreover, patients deserve to be able to channel certain information flows and gain some basic controls over the presentation, disclosure, and redisclosure of sensitive information. This talk will describe and examine some legal and technical infrastructure designed to help realize these goals.