Published on: 7th August 2017
The Farr Institute’s work in ethics and governance addresses the legislative and regulatory frameworks around the use of ‘big data’ for research (primarily information governance, research governance and research ethics) and measures to ensure compliance in these areas.
Regarding the Government’s recent response to Dame Fiona Caldicott’s review on cyber security and data, The Farr Institute’s Innovative Governance Working Group state:
“The Farr Institute of Health Informatics Research welcomes the Government’s response to the National Data Guardian for Health and Care’s Review of Data Security, Consent and Opt-Outs.
“The UK health data science and research industry is heavily reliant on not just the availability of reliable, complete data and robust data flows, but most importantly the trust and support of those about whom the data is collected and for whom the research is being undertaken. By embracing the cybersecurity and trust challenges, we can maintain excellence in realising societal benefit from the wealth of health and social care data and the talent and expertise of our data science community.
“The National Data Guardian’s review and the Care Quality Commission’s review of Safe Data, Safe Care brought unprecedented scrutiny on the security of handling sensitive health related data, shedding light on challenges to good, secure practice. They drew attention to a culture that did not share good practice and expertise born of experience, and the need for that to change. The reviews further highlighted the importance of public trust in the reuse of data that has been collected about their care, sustaining that the significance of good security practice is vital in demonstrating trustworthiness.
“It is very encouraging indeed that the Government’s response has chosen to meet the challenges that the reviews laid before the health care data community, as well as those raised by the cyber threats that recently became all too apparent. The response recognises the need to support people working with sensitive data in the health and research sectors with not only the training and education they would welcome, but also the empowerment to evolve the professional culture towards one that fully embraces the digital age and cybersecurity, meeting this with a commitment to fund the resources essential for achieving that change.”
To find out more about The Farr Institute’s work in this area, visit the ethics and governance section of our website.