Can Open Data Drive Innovative Healthcare? | Techonomy

" ... Privacy concerns are one of the thorniest obstacles. Even as the open data movement gains strength, many questions remain about how to protect information about individuals. Without proper controls, such information could enable discrimination, cause embarrassment, or be used for other undesired or abusive purposes. Commercial realities present another major obstacle. Private healthcare companies, such as those that process insurance claims or implement hospital information systems, often prefer to sell data rather than share it. If they can't monetize health data, some companies have little incentive to collect it at all. Health researchers conducting clinical trials or policy evaluations might also hesitate before sharing data. While doing so can invite collaboration and faster validation of results, it can also empower competitors to make their own discoveries or publish results first. With patents, research grants, professorships, and other rewards at stake, competitive pressures can often discourage data sharing. The hesitancy to share data can also persist after research is completed. If a study didn't lead to meaningful findings .. To overcome these challenges, a growing array of stakeholders -- including healthcare and tech companies, research institutions, NGOs, universities, governments, patient groups, and individuals -- are banding together to develop new regulations and guidelines, and generally promote open data in healthcare.  Some of these initiatives focus on improving transparency in clinical trials. Among those pushing for researchers to share more clinical trials data are groups like AllTrials and the Yale Open Data Access (YODA) Project, donor organizations like the Gates Foundation, and biomedical journals like The BMJ. Private healthcare companies, including some that resisted data sharing in the past, are increasingly seeing value in open collaboration as well ..."