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OECD countries are developing strategies to improve the quality of life of those affected by dementia and to support long-term efforts for a disease-modifying therapy or cure. The OECD jointly hosted an international workshop in Toronto with the Ontario Brain Institute (OBI) and the Institute of Health Policy, Management and Evaluation (IHPME), University of Toronto on 14-15 September 2014. The aim of the workshop was to advance international discussion of the opportunities and challenges, as well as successful strategies, for sharing and linking the massive amounts of population-based health and health care data that are routinely collected (broad data) with detailed clinical and biological data (deep data) to create an international resource for research, planning, policy development, and performance improvement. The workshop brought together leading researchers and academics, industry and non-government experts to provide new insights into the opportunities and challenges in making “broad and deep” data a reality – from funding to data standards, to data sharing, to new analytics, to protecting privacy, and to engaging with stakeholders and the public. Government leadership and public-private partnership will be needed to create and sustain big data resources, including financing for data infrastructure and incentives for data sharing.

Although diverse neurodegenerative diseases cause dementia, they share two important features. First they have long pre-clinical periods with varying disease progression trajectories. Second, their causation is driven by both genetic and environmental factors. Big data approaches will provide opportunities to better understand disease progression and the complex interplay between genes and the environment. Although there are many important biological, clinical and population data sets available, there are key data limitations. Overcoming these limitations and reaping the benefits of linked data will require successful resolution of several challenges including: making existing and newly acquired data available in open access platforms that protect participant privacy; harmonising data so that they can be usefully merged; improving our collection of population-based exposure data; curating databases; and managing expectations. Appropriate funding needs to be set aside for all phases of a big data discovery paradigm as part of a balanced portfolio of research.

Data that describes health care pathways and outcomes is a key element of the broad data needed to be part of an international strategy around big data and dementia. Effective collaboration of health ministries, justice ministries and data privacy regulators is required if the societal benefits from the use of these data are to be maximised and the privacy risks minimised. OECD conducted surveys to better understand the use and governance of these data in different countries. The surveys showed important differences across jurisdictions and identified key governance factors. The chapter concludes that governments should share best practices in data governance and norms for accrediting data processors. It highlights the importance of reviewing legal frameworks for protection of personal health information privacy, the nature of patient consent and data security risks and mechanisms to mitigate them. The paper emphasizes the need to explore mechanisms to engage the public in the discussion about benefits of these data and the commitment to data privacy and the rights of data subjects.

The burden of dementia on individuals, families, communities and health care systems is rising globally as world populations age. The Toronto workshop on 14-15 September 2014 identified opportunities and challenges, as well as successful strategies, of sharing and linking the massive amounts of population-based health and health care data that are routinely collected (broad data) with detailed clinical and biological data (deep data) to create an international resource for research, planning, policy-development, and performance improvement. While the potential benefits to dementia cure and care are great, there are significant challenges related to data quality, data sharing and access to data; the protection of privacy; public engagement; and funding and incentives. Moving forward will require active involvement of governments, the research community, the private sector and the public. Next steps could include pursuing the possibility of creating a global centre of excellence to share and promote best practices; developing metrics to compare countries’ performance over time, and conducting pilot studies to demonstrate the value of linking “broad and deep” data to discovering better therapies and improving health care services.

G8 countries made a bold and ambitious commitment to find a cure or diseasemodifying therapy for dementia by 2025. This commitment has been a catalyst for global action to improve the health and social care of people with dementia and to accelerate innovation to discover new therapies to prevent or limit this disease. International collaboration is critical to encourage multi-disciplinary, cross-border research and to enhance knowledge transfer of effective solutions. The UK Department of Health along with G7 countries, the OECD and the WHO are leading a series of projects, workshops and events in 2014-15 toward solutions to different aspects of this challenge, ranging from drug discovery through to better health care.

Governments face the daunting public policy challenge of dealing with the large and growing burden of dementia. High quality and sustainable systems of care for dementia will require innovation and profound changes in both financing mechanisms and health and social care delivery systems. To address this challenge, international performance comparisons and practice benchmarking systems are fundamental to support sound public policy development and shared learning from policy innovations. This chapter provides a conceptual framework for performance measurement of dementia care systems that can be used to map current international performance-comparison efforts, define gaps and guide efforts to fill those gaps. The chapter suggests that the World Health Organization (WHO) and the Organisation for Economic Co-operation and Development (OECD) engage their member countries in a co-ordinated and collaborative effort to share best practices for dementia care through practice benchmarking. The chaoter concludes that performance comparisons should be systematic and supported by relevant and valid information, interpreted in context and that practice benchmarking for dementia care systems will require substantial investments including the strengthening of health information systems.

The burden of dementia on individuals, families, communities and health care systems is rising globally as world populations age. The demand for a therapy to prevent dementia or to slow its progress is great, but traditional approaches to therapeutic discovery have not been successful. New approaches are needed to discover a cure or disease-modifying therapy and to improve health and social care services for the growing number of people with dementia.

Creating a big data resource that brings different data sources together so that they can be shared internationally is challenging. This effort needs to be guided by principles that ensure the integrity, excellence and multi-disciplinarity of the science, while at the same time recognising the importance of privacy and data security. The chapter provides examples and lessons from several existing efforts. It suggests that putting the patient at the centre and developing partnerships are essential and recognises the value of learning from each other about governance and data standardisation policies. It concludes that we need to have open dialogue among existing big data initiatives, that we develop a shared commitment to privacy by design, and that we need to embark on specific efforts to test the feasibility and sustainability of international data sharing.

Dementia is a global challenge to all levels of government in every country. Many governments have developed policy frameworks to deal with the dementia challenge and these policies deal with issues related to the care for those with dementia and their caregivers, as well as support for efforts to identify strategies for prevention and cure. Governments can play an important role in efforts to create big data resources through their regulatory and legislative roles related to privacy, data access, data standardisation, and broader economic and trade policy, through their role as a provider and funder of health and social services, and as the largest supporters of research. Governments need to be clear around the importance of big data, expand and support the organisation of data to reflect the fact that care for dementia is bigger than just health care services, and ensure that big data are used across our health, social care, and research sectors to their greatest advantage.

There is a shared interest in the discovery and advancement of novel therapeutic interventions for dementia and in particular, in interventions that address disease progression. The history of drug development suggests that the approach to discovery can be either biochemically target-based or phenotypic. There are opportunities and challenges for dementia in both of these approaches. The creation of an accessible big data resource for dementia could provide a “base camp” to support a range of efforts including opportunities around disease categorisation, therapies for vascular dementia, disease modifying drugs, symptomatic therapies, and preventive and risk-modifying strategies. Bringing broad and deep data together can provide opportunities to provide a better understanding of disease categories and progression that will allow for more focused efforts around cardiovascular medicines and symptomatic treatments. Inclusion of data on exposures and risk factors will allow for preventive therapies and nonpharmaceutical approaches to risk factor modification. Better accounting of the full range costs of dementia will clarify the rate of return on new interventions and spur investment in research and discovery.