The inaugural meeting of the NEWDIGS Data Program was held in January 2015, and brought together international experts from academia, government, information technology, and the healthcare sector. A series of panel discussions focused on identifying the gaps and opportunities that might be addressed through better international cooperation in data system design and use. Through discussion, participants joined in formulating a research agenda with associated pilot programs to develop the tools, methods and policies needed to leverage real world evidence for better decision-making.
The workshop referenced three important paradigm shifts currently unfolding in biomedical and healthcare innovation, which are converging in a way that is forcing advancements in the world of health data that many believe are long overdue. These change drivers include:
- Increasing pressures to accelerate access to new and better treatments for patients in need.
- The advancement of translational and “precision” medicine,” associated with erosion of the traditional blockbuster model of innovation toward one that targets small subpopulations and individually tailored treatments.
- Growing demands from reimbursement/coverage decision-makers for quantifiable measures of relative effectiveness and value of new drugs.
The workshop was designed to explore the need for international cooperation on development and use of data and data systems; to define the domains that need to be addressed for successful cooperation, taking into account lessons learned from the successful design and implementation of current distributed data networks; and to develop a plan of action for NEWDIGS.
A strategic portfolio of activities has already been launched in the NEWDIGS Data Program and addresses many of the points raised in the discussion that took place. The discussions from the January event will also help shape the evolution of the program moving ahead. The resulting action plan for the NEWDIGS Data program is summarized in the following event report.