My Lords, my amendment concerns patient data. I want to probe the meaning of new Clause 14Z61, proposed by Clause 20(2), which relates to the permitted disclosure of information
by integrated care boards. It sets out, on page 27 of the Bill, a number of conditions under which disclosure can be made. They include when
“the information has previously been … disclosed to the public”
or
“the disclosure is made in accordance with any enactment or court order”.
That seems perfectly sensible. However, proposed new subsection (1)(f) contains a catch-all condition under which a disclosure can also be
“made for the purpose of facilitating the exercise of any of the integrated care board’s functions”.
That seems remarkably open-ended. My amendment seeks an assurance that this power excludes the personal data of patients.
We have already had one go at the issue of data and digital transformation, and I have told the House that I am right behind the efforts of the NHS and the Minister’s department to encourage the digital transformation of the NHS. The potential is clearly enormous. However, public confidence depends on the integrity of the system and having embedded in it a guarantee that every use of data will be consensual, safe and transparent.
The recent Laura Wade-Gery review, on which a number of noble Lords have commented, acknowledged some of those concerns. As she said:
“The field of data science is undergoing a revolution as new tools such as machine learning transform our ability to gain insights and improve outcomes. These advances, combined with the explosion of new data driven commercial business models, have caused citizens to be concerned about the privacy of their individual health data and the controls in place over its dissemination and use.”
There may be situations where a patient does not want a doctor—by the way, just for the Chief Whip’s reassurance, I have not spoken for 37 minutes as the clock says—to tell another doctor something about them, yet this can be ignored by those who want to copy records across a lifetime. Modern communications have created the capacity to copy medical records on a scale that can shatter medical confidentiality.
The experience of Care.data is surely a lesson for us. The decision to axe the scheme followed the publication of two reports that supported far greater transparency over what happens to the information, and opt-outs for patients who want their data seen only by those directly caring for them. A review by the late Dame Fiona Caldicott, and a second by the Care Quality Commission, recommended tougher measures to keep people’s medical information confidential. The Caldicott review said that there needs to be much more extensive dialogue with the public as to how their information can be used. As she said:
“Citizens have a right to know how their data is safeguarded. They should be included in conversations about the potential benefits that responsible use of their information can bring. They must be offered a clear choice about whether they want to allow their information to be part of this.”
This was brought home to me recently by NHS England’s announcement that it is to give trusts, as employers, access to the Covid and flu NHS vaccination records of their staff. I am fully behind the vaccination drive and sympathetic to the Government’s mandating of vaccines, but the announcement said:
“To assist Trusts with understanding the vaccination status of their workforce, we are providing a solution for Trusts to view the vaccination status of staff who are on the Electronic Staff Record … system. To do this, we are undertaking an exercise on Trusts’ behalf, to match ESR data, using NHS numbers, with vaccination data held in the National Immunisations Management System … which includes data drawn from all point of care vaccination systems. Following a successful import of ESR data into NIMS, a dashboard will be provided to each Trust detailing their workforce Covid and Flu vaccination uptake, drilled down to employee-level.”
Let me be clear: I support the vaccination drive, as I said, but am I the only one to worry about the access to confidential data that is being given? I recognise that we are talking here about electronic staff records as opposed to electronic patient records, but the principle of releasing patient data is the same.
I would like to hear some assurance from the Minister about the use of this clause and the open-ended nature of new Section 14Z61(1)(f), because, as I think we will shortly hear from the noble Baroness, Lady Brinton, such an open-ended disclosure provision in other legislation would be looked at with very great concern. Having said that, and having taken up 44 seconds, according to the Clock, I beg to move.