The Big Data Dilemma Inquiry
The opportunities for big data, and the risks
PHG Foundation welcomes the opportunity to contribute to this consultation. In light of our specific sectoral experience, our response focuses on genomics in the NHS.
The following broad issues are considered in our response: infrastructure challenges and solutions; the role of big data in precision medicine; and legal considerations and appropriate safeguards for data sharing.
In particular, we would like to highlight recommendations 12, 13 and 15 from our Realising Genomics in Clinical Practice report (reproduced below), which we have used as the basis for our recommendations.
Recommendation 12: A secure, comprehensive, accessible NHS Database is urgently required that can underpin ongoing genomic sequence interpretation, improve clinical outcomes and support the needs of clinical services. This nationally accessible database should be considered an integral part of NHS genomic testing services and will need to be resourced. Any initiative should be long-term and sustainable.
Recommendation 13: Deposition of data into the secure NHS Database needs to be (i) mandated through enhanced service specification, accreditation, and commissioning and (ii) supported by NHS England policies. Any compulsory data sharing must be consistent with existing regulatory frameworks, and address potential concerns about safeguarding privacy and identifiability.
Recommendation 15: Systems and legal processes need to be put in place to allow the contents of the NHS Database to be shared more widely outside the NHS. In order to address proposed legislative changes, the optimal method of establishing a firm legal basis for sharing identifiable patient data beyond the clinical care of the patient would be to seek routine appropriate consent. This will contribute to building public trust.