Open data and the four tiers of health data sharing | Health Data Innovation

"Today is Open Data Day. Open Data enthusiasts, activists, developers, hackers, scientists, and other entrepreneurial data geeks are gathering around the world to demand more open data, work in hackathons or code-a-thons, and engage in data discussions. Just google 'open data day events' to see the scope. It's very encouraging. The benefits of releasing open data are manifold. Take as an example open government data: It increases trust in the government by providing more transparency and accountability. It helps improve public services. It can stimulate economic activity and generate jobs. It helps governments improve the use of their own data. It helps increase the exchange of information among different departments and ministries (which are often siloed) and improve collaboration. And as an additional perk, open data will also lead to savings by reducing work on specific data requests. There are plenty of examples where this works really well. The release of weather data has led to great weather apps, insurances, and other services, GPS data is used in fabulous apps and services in almost any mobile device now, public traffic data are used to make commuting and traveling easier and so on. The situation for health data is slightly different. Releasing health data as open data requires consent of the subject and privacy considerations, and there are specific regulations aimed at data collected in the delivery of health care (e.g. HIPAA in the US) and oversight by Institutional Review Boards (IRB). At the same time, the stakes in health are higher than in many other fields. The sharing of health data enables data users to provide evidence for policy and decision making, track performance, evaluate and improve quality, identify effective interventions, optimize healthcare pathways, and improve health of individuals and populations. In short, sharing health data saves lives. There are four different degrees of openness for health data sharing. Given the potential impact, the goal for every organization holding health data should be to publish as much data as possible at the highest level of detail possible, while protecting subjects and complying with regulations..."