BLOG – Stefanie Auer visited the INCF-OECD Workshop – The concept of “open science” in dementia research

Recent research failures could be seen as a chance for change, a window of opportunity, where new innovative concepts could set the tone for future research strategies in dementia research. The OECD suggests a more effective collection and use of data in the future. This could substantially help advancing our knowledge around dementia care and treatment. New concepts of common data collection across studies, data sharing, data re-use, open access publishing, publishing data sets, all concepts of “open science” and “big data” should be explored in this context. Not only could such new concepts actualize the goal of finding a cure for Dementia but also improve our knowledge on the effectiveness of different care- and psychosocial support models for both, the person with dementia and the support providers. The INCF (the International Neuroinformatics Coordinating Facility), the OECD (the Organisation for Economic Co-operation and Development) and the US Alzheimer Organization support the idea of “open science” and data sharing in all disciplines of health research in order to improve transparency and promote faster progress. However, in order to be successful, singular efforts need to be coordinated and certain general standards need to be developed. For this purpose, a workshop was held in Stockholm from September 20-21, 2015. Researchers, funders and publishers discussed the possibilities and hurdles for open science in this field. “Big data” can come from a variety of sources, such as scientific research studies, cohort studies, medical records and the internet (“Citizen Science”). Potentially, the linking and sharing of different data sources could be beneficial. However, special knowledge on the nature of data and the necessary technical infrastructure is necessary. Data sharing could have a dramatic impact on the advancement of Dementia research, but only if the implementation adheres to strict epistemic, scientific and moral standards.