Global discussions on data sharing

In OBI’s goal to improve brain health, research data are one of the basic building blocks.  Data are assets that hold value because they can be shared, analysed, and reused in different ways to support new discoveries and reduce the loss of resources. One opportunity to reuse data and uncover new insights is the linking of routinely collected population and healthcare data, or ‘broad’ data, with ‘deep’ research data (e.g., imaging, genetics, etc.).  To harness data’s full potential, OBI has developed several initiatives including an informatics platform, an international workshop, and internships to address linking and sharing data in new ways.

OBI aims to directly address data sharing through the development of an analytics platform: the Brain Centre for Ontario Data Exploration (Brain-CODE). OBI-funded research programs are structured to allow for the collection of comprehensive, standardized data across various conditions. Researchers in the programs input their data into Brain-CODE, which has the capability to link their deep data to broad data held in other databases. This will allow researchers and clinicians to be able to ask new kinds of research questions and develop a more complete understanding of patients’ characteristics that can be used to build a roadmap towards better treatment options and outcomes for people with shared traits, or patient groups.

Last September, OBI took part in global discussions on data sharing by jointly hosting an international workshop with the Organisation for Economic Co-operation and Development (OECD) and the Institute of Health Policy Management and Evaluation (IHPME) in Toronto. The workshop brought together over 60 local, national, and international leaders who shared their perspectives on how big data can be used to tackle the growing challenge of dementia. As a workshop outcome, a set of papers on the development and use of data were published. These papers offer new insight into the opportunities and challenges associated with the use of both deep and broad data for researchers, clinicians, patient advocacy groups, government, and the public.

While focusing on data sharing and management, it is vital to ensure patient privacy and data security. In fact, a theme brought up at the workshop and in the published proceedings is the need to put patient concerns at the centre of activities and organizations that collect data. Putting patients at the centre of clinical research means that privacy and security need to be embedded into the design specifications of informatics platforms that process and store patient health information. Since 2012, OBI has been working with Ontario’s Information and Privacy Commission to make sure that Brain-CODE is being developed to the highest standards. By demonstrating excellence in privacy through its approach to designing this platform, OBI was granted “Privacy by Design Ambassador” status by the Information and Privacy Commissioner of Ontario.

Communicating about the uses of and safeguards surrounding research data can be challenging but being clear is essential to public trust. To achieve this, researchers, advocacy groups, and government will work together to develop policies that promote collaborative and integrated approaches to research and data sharing. In so doing, there are two major benefits: risk can be minimized; and the greater value of using data properly is demonstrated.

Awareness of brain disorders is growing, neuroscience research is in the global spotlight, and the brightest minds in science, medicine, business, and policy are turning their attention towards this problem. OBI’s integrated approach to brain research includes linking deep and broad data through informatics platforms like Brain-CODE, ensuring patient security and privacy, and collaborating internationally so that the maximum value of research is achieved to assist people living with brain disorders.

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