Memorandum submitted by Sir Mark Walport (CJ 23)
Coroners and Justice Bill - Data Protection
I am writing to give my views on the data sharing provisions of the draft Coroners and Justice Bill. I write in my personal capacity as co-author of the Thomas/Walport Data Sharing Report, and not as Director of the Wellcome Trust.
I am, of course, pleased to see that the recommendations Richard Thomas and I made in the Report are being incorporated into legislation. However, I have some concerns about the Bill in its current draft, for reasons I outline below.
There is no doubt the Information Commissioner's powers need strengthening - as we concluded in the Report, "there is strong evidence that his bite needs sharpening" (paragraph 7.14) - but I am concerned that this is not yet achieved in the draft legislation.
An example of this lies in the draft provisions relation to Assessment Notices. As we stated in the report, distinguishing between public, private and voluntary sectors makes little sense, especially as more information is shared across sectors whose boundary lines are forever shifting. I would argue that the provisions relating to the Assessment Notice should be extended to include organisations outside the public sector.
There are also no meaningful sanctions for failure to comply with the requirements of an Assessment Notice: this needs strengthening in order for it to be taken seriously.
One of our key recommendations (8(a) and (b)) was the need for a fast-track procedure where there is a genuine case for removing or modifying an existing legal barrier to data sharing. I am pleased that this has been taken up through Clause 152 of the draft bill. I would, however, draw your attention to concerns that the drafting goes wider than the "precisely defined circumstances" described in our Recommendation, as set out by Richard Thomas in his evidence to the Bill Committee.
In the Report, we also highlighted examples where the authorisation process would not be appropriate, for example in the case of large-scale data-sharing initiatives that would constitute very significant changes to public policy, such as those relating to the National DNA database or the National Identity Register. The draft legislation does not appear to address these issues.
Research including health records research
There is still important work to be done relating to data sharing in relation to research, but I am concerned that the specific instance of the use of health records for research has dominated some of the press coverage of the current Bill. It is important to stress that the order-making power in the draft legislation relates to Recommendation 8 in our review. A separate package of measures is required to deliver Recommendations 15-17, in relation to research and statistical analysis. I urge Government to introduce appropriate mechanisms to ensure research access to personal information as rapidly as possible, according to the safeguards that we set out in our recommendations.
Data sharing is shrouded in confusion, and public confidence is evaporating. I hope that, as a Committee, you will be able to ensure that there is a legislative mechanism that ensures greater scrutiny and allows beneficial data sharing with appropriate safeguards in a transparent, consistent and proportionate manner. In particular, I encourage you to ensure that the Information Commissioner's powers are fully strengthened.