Science and Technology Select Committee Inquiry: The Big Data Dilemma
Written evidence submitted by Alzheimer’s Research UK
September 2015
Introduction to Alzheimer’s Research UK
1.1Alzheimer’s Research UK (ARUK) is the UK’s leading research charity aiming to defeat dementia. We fund world-class, pioneering research, focusing on the prevention, diagnosis, treatment and cure of dementia. We are energising a movement across society to support, fund and take part in dementia research. Our funding is directed towards both translating scientific discovery into patient benefit and in growing the research base. Our ultimate goal is a preventative treatment or intervention for neurodegenerative diseases.
Context for dementia research
2.1 Dementia is a term used to describe a group of symptoms that occur when brain cells stop working properly. There are 850,000 people living with dementia in the UK today, and 44 million people affected worldwide. There is currently no disease-modifying intervention available for dementia. This means that dementia isdependent on research and development to find a treatment or cure.
2.2 Historically, funding into dementia research has been low, although in recent years investment has started to increase. Given the complexity of dementia, and the low starting point in terms of understanding, every opportunity must be made to use of whatever data is currently available. Big data has the potential to play a pivotal role, by being able to link detailed data to create a more complete history of a patient’s medical history, interventions and outcomes[i]. It has thepotential to accelerate evaluation of treatments and care models, and help to improve understanding in areas such as the role of lifestyle and health on the risk of developing dementia.
Opportunities for big data
3.1 At the broadest level, successful use of big data can help to drive national economic growth by driving innovation in the life sciences; for example for every £1 spent by the Government on R&D increases private sector productivity by 20p every year[ii]. Given the success that the UK has had in this area, it is important that the country continues to lead and innovate by supporting developments such as innovative data analysis.
3.2The NHS has the potential to be a world leading organisation for clinical research, providing unrivalled data in terms of depth and breadth. If used correctly joined up data and data platforms can help to streamline key hurdles to research, such as clinical trial approvals and multi-site permissions. This would undoubtable help the NHS goal of becoming a world leader in research.
3.3In terms of dementia research, there is a considerable role for big data. Currently several projects are already using big data, such asthe Dementias Platform UK established in 2014, which brings together dementia researchers with large population study data to help better understand dementias and how to treat them.
3.4The European Prevention of Alzheimer’s Dementia project has 35 partners from industry and academia who have formed a collaborative research initiative to improve the chance of successfully preventing Alzheimer’s dementia and to better understand early aspects of Alzheimer’s disease before dementia develops. It is a 5 year project, which launched at the start of this year, to integrate data from existing cohorts to create a registry of 24,000 people in Europe, of which 1,500 will be invited to participate in a trial to test new treatments for prevention of Alzheimer’s dementia. By taking a collaborative approach, the identification and referral of appropriate patients will be accelerated, and several treatment options can be tested within one trial.
3.5There also remains the great potential to utilise medical records within the NHS to support research. Initiatives such as care.datacould provide much broader detail of medical histories, which are particularly valuable for understanding the life course of an individual and how it might change their risk of developing dementia.
Risks
4.1The use of personal, sensitive information about individuals brings risks particularly in terms of security of the data management and governance. There must be adequate safeguards and processes to ensure all data is stored and shared safely, accompanied by ongoing investment to ensure that security of data is maintained. There are considerable challenges, particularly in terms of data governance, for international data sharing. However, there is a good precedent for strong data governance following the Caldicott review and subsequent changes. It is important that more is done to reassure the public and increase awareness and understanding about the low risk / high reward nature of the use of data and the quality of safeguards.
4.2There are cultural risks to the success of big data within research. Data sharing is not sufficiently recognised and rewarded by funders or the Research Excellence Framework. There is a lack of infrastructure and cultural support. To make progress, there is a need to engage the research community, private sector and the public.
5Gaps in skills
5.1There remain gaps in the skill base, particularly in terms of methodology development and data analysis for the biomedical research field. While this was recognised in the 2013 Government data strategy[iii] it will take time and resources to address this issue.
5.2It is recognised that many of the significant scientific breakthroughs take place at the boundaries of subjects, where collaboration and crossover with other fields can benefit insight and thinking. Support is need to nurture such relationships with training to develop the appropriate interdisciplinary skills.
6Public understanding
6.1There are currently significant issues around public perception of big data and data sharing, particularly with regard to medical health records. Mishandling of the care.datainitiativeposes risks for all other data-sharing plans and constructivepublic messaging is required to overcome public fears and mistrust. There are opportunities to show that existing data sharing such as the Clinical Practice Research Datalink within primary care can work successfully and provide considerable patient benefit.
6.2The public need ongoing engagement and information to help them understand the benefits and potential risks of patient data sharing. This needs to include outlining what patients are consenting to, and how data uses might change in the future.The NHS and clinicians have an important role in communicating and supporting patients to consent to data sharing and also to become involved in research.
7Government support to facilitate R&D on big data
7.1While there is recognition of the growing value of big data and data sharing, the research environment is not currently perceived to support or reward researchers who generate and share datasets[iv].This problem is reiterated in the Research Excellence Framework, a key status and funding assessment for researchers, which focuses upon Research Impact in journals, rather than collaboration and broader information sharing. Government support is need to encourage changes in focus and funding to encourage data sharing.
7.2Another consideration for big data in the future is the potential impact of EU data protection legislation. Negotiations have been ongoing for several years around the final detail of the General Data Protection Regulation (GDPR), and should conclude by the end of 2015. As negotiations are not complete it is difficult to comment on the detailed implications for medical research, however there are likely to be impacts around the introduction of privacy impact assessments and the need for accountability and demonstrating compliance. The concern is that the new regulation, while safeguarding individual rights will result in complex processes that hinder wider access to research data. The Government needs to be advocating for the UK research sector to ensure there is balance between individual rights and wider public benefit.
[i] Anderson, G. and J. Oderkirk (eds.) 2015. Dementia Research and Care: Can Big Data Help?, OECD Publishing, Paris.
[ii]Campaign for Science and Engineering. 2014. The Economic Significance of the UK Science Base.
[iii] Department for Business, Innovation and Skills. 2013. UK data capability strategy: seizing the data opportunity
[iv] Expert Advisory Group on Data Access. 2014. Establishing incentives and changing cultures to support data access