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Experts respond to the introduction of new data legislation, GDPR, and a new system for sharing patient data.
Prof Gil McVean, Professor of Statistical Genetics and Director of the Big Data Institute, University of Oxford, said:
“Data from patients and participants in large-scale biomedical studies has become the key driver in attempts to understand the causes of human disease and how best to intervene. What’s critical to such science is our ability to get the broadest view of health, combining information from hospitals, GPs and national registries, along with rich biological measurement, for example including imaging and genetics, and information on environmental exposure and behaviour. Moreover, to make sense of such rich and complex information, we need to share data with researchers of from many different areas, from computer scientists to clinicians. The willingness of individuals to participate in such studies is critical to their success and much effort goes into making sure that individuals are informed about what their data are used for and by whom. The GDPR puts into law many of the practices that we, and other biomedical big data researchers, routinely use to guarantee appropriate use, sharing, accountability and transparency. I am delighted that other areas of data science that use rich and highly personal data will be held to the same level of standards.”
Dr Hakim Yadi, CEO of the Northern Health Science Alliance, said:
“It is essential for researchers and scientists to have access to data to enable them to discover and evaluate the best innovations, treatments and ultimately provide the best outcomes for patients.
“However, as with our Connected Health Cities programme, it is essential to put patients in control of how their data is used. We have used the Citizen’s Jury approach which put people at the heart of how we established Connected Health Cities. Ensuring citizens know how their information is being used, engaging with them in depth to make sure that that not only do they formally provide their consent but that they are in control of their data.
“By establishing this level of engagement and trust professionals and patients can benefit from the huge opportunities in sharing patient data. From this we have pioneered the new widely used #DataSavesLives campaign to better engage the public on this issue.”
Prof Sir Robert Lechler PMedSci, President of the Academy of Medical Sciences, said:
“Access to patient data is vital to maintaining the UK’s outstanding biomedical research base. It is only with the use of data that scientists can delve into the complex interactions between environmental, behavioural, biological and genetic factors which shape human health. Access to NHS data is crucial for the development of innovative treatments and diagnostics, and for delivering high-quality patient care and services for people now, and in the future.
“Empowering the public to make decisions about sharing data is a big step for the NHS. It is important that the new opt-out framework is accompanied by clear communications for the public, patients and healthcare professionals. This information must explain the full benefits of data use and its value for research, allowing everyone to make the best, most informed decisions for the benefit of everybody’s health.”
Ms Nicola Perrin, Understanding Patient Data, said:
“Four out of five people don’t know what happens to their patient records. It’s crucial that people can find out how and why health information is used, and how it is kept safe. It is really positive to see the NHS starting that conversation today and, importantly, offering a choice about how data is used. I hope it will be a first step to rebuilding public confidence, to ensure responsible use of data can save lives.
“The new national data opt-out is not a re-run of care.data. This time round, there is a clear mechanism by which people can opt-out, the communications materials have been carefully thought through and the opt-out is well explained, there has been effective engagement with both patients and clinicians, and – most importantly – the safeguards for protecting data have been strengthened.”
Understanding Patient Data blog ‘Is the new national opt-out just care.data all over again?’: http://understandingpatientdata.org.uk/news/its-not-caredata-blog
Ms Aisling Burnand MBE, Chief Executive of the Association of Medical Research Charities, said:
“The new law strengthens the existing safeguards to protect personal data. We are pleased that it does not put up unnecessary barriers for medical research, whilst also ensuring greater transparency in how personal data is used. There is transformative potential of patient data to benefit patients which cannot be understated. Using data effectively and responsibly means that the causes of disease and ill-health can be more easily identified and new treatments developed. . From today data protection legislation is being strengthened with the introduction of the General Data Protection Regulation (GDPR) and patients are soon to be offered a new choice about how their NHS data is used. Now, more than ever, it’s vital to have better conversations with the public to explain how data is kept safe to build confidence and trust.”
https://digital.nhs.uk/news-and-events/latest-news/national-data-opt-out-introduced-across-england
Declared interests
Prof Sir Robert Lechler: Robert Lechler is Vice-Principal (Health) and Executive Director of King’s Health Partners Academic Health Sciences Centre.
Nicola Perrin: Understanding Patient Data receives funding from Wellcome, the MRC, Department of Health, ESRC, and Public Health England. Nicola is also on the advisory group for the national opt-out implementation programme.
Dr Hakim Yadi: Dr Yadi is the CEO of the Northern Health Science Alliance Ltd, Non Executive Director Anti Microbial Resistance Centre, Non Executive Director North West eHealth Ltd and Co-Founder Closed Loop Medicine Ltd.
None others received.