Future Care Capital welcomed the introduction of amendments concerning ‘data sets of national significance’, accepted during the Report Stage of the Data Protection Bill in the House of Lords, and is concerned that the provisions may be lost.
The charity has followed the passage of the Government’s Data Protection Bill, now at Second Reading in the House of Commons, with great interest over recent months. It has identified a number of issues where it feels aspects of the Bill would benefit from further interrogation or amendment.
The issues identified by Future Care Capital span the scope for:
The core basis for Future Care Capital’s position on the Data Protection Bill was established in its report last year, Intelligent Sharing: unleashing the potential of health and care data, which pointed toward the scope for a new ‘digital contract’ between individuals, business and the Government. In particular, the charity advocated a balance between harnessing ‘data for good’ to further research, innovation, and growth, whilst safeguarding individuals through the championing of the highest ethical standards.
Future Care Capital, therefore, welcomed related amendments moved by Lord Clement-Jones and Lord Paddick during the discussion of the Bill at Committee Stage in the House of Lords, and the subsequent introduction of amendments concerning ‘data sets of national significance’ by Lord Mitchell, Lord Clement-Jones and Lord Stevenson which were accepted during its Report Stage. The provisions introduced to the Bill with regard to ‘data sets of national significance’ will, if retained, require the Information Commissioner’s Office (ICO) to maintain a register of publicly controlled personal data of national significance, and to prepare a code of practice which contains practical guidance in relation to personal data of national significance.
Any such register will almost certainly impact health data controlled by public bodies to the extent that the UK benefits from unique health data sets which are of interest to researchers right around the world. Meanwhile, the Code must provide best practice guidance in relation to information sharing agreements which should serve to increase transparency and build public trust, as well as introduce greater consistency to initiatives that involve publicly funded data controllers working with third parties.
The Code would also provide guidance in relation to value for money calculations and, to that extent, ensure that HM Treasury’s Green Book can be updated to reflect intangible asset holdings that are controlled by public bodies. In particular, that means going beyond mere financial value to take into consideration the social, economic and environmental value which properly underpins ‘public benefit’ in relation to health data set analysis and usage. This is particularly welcome from Future Care Capital’s perspective, because financial value will not always and necessarily outweigh other considerations – in particular, where the prospect of significant health or care benefits is concerned.
The additional requirement of the Code concerning guidance about securing financial benefits from information sharing agreements is, nonetheless, very welcome. It is, therefore, concerning that the ICO has released a briefing in advance of the Bill’s Second Reading in the House of Commons in which she states that: “…she is not best placed to advise on ‘value for money’ and securing financial benefits from the sharing of such personal data with third parties for the purposes of processing or developing associated software.” 
The argument for these amendments is clear and the Information Commissioner, herself, acknowledges as much to the extent that she also writes: “The clause raises important issues and these may become more pressing in future as technology develops and individuals become more aware of where their data is held and how it is put to particular uses.”
Who, then, should assume responsibility for safeguarding health and care data as a national asset for public benefit?
“The Data Protection Bill will shape information handling in the UK for decades to come. If Parliament fails to grasp the opportunity to enshrine in law some of the key principles which should underpin the use of ‘data for good’, we risk undermining public trust when public bodies share information with third parties to enable research and innovation in health and care. “The provisions introduced by the House of Lords in relation to ‘data sets of national significance’ should serve to ensure that action will be taken to deliver outcomes that are in the public interest as well as for public benefit – in particular, in respect of the UK’s unique health data assets. Are our health data sets so valuable they could underpin a ‘sovereign health fund’ and, thereby, improve the long-term sustainability of the National Health Service? Perhaps – a Norway model has been talked about by some. “From our perspective, what results from the new treatments, technologies and services that such data sets of national significance might yet make possible is of most interest. However, the Government must take steps to ensure that they flow from information sharing agreements which are both in the public interest and for public benefit.” Annemarie Naylor, Director of Policy at FCC