In the concerns I am listing, I am not touching on the use of data in medical research. My concern is about the revelations we have had in recent weeks. I am citing commercial uses. Those data are being used on a chargeable basis and the companies involved seem to be crowing about it.
Can a project such as care.data guarantee that what patients sign up to now—or at any point in time—will not mean something different in future months when new datasets are gathered? The hon. Member for Totnes (Dr Wollaston) touched on some of the exciting possibilities for data, but new uses are being planned all the time. I mentioned systems in the US, but the Health Secretary recently signed a memorandum of understanding with the US Health Secretary for secondary uses sharing. The Minister last night said that he would not comment on a US system, but our hospital patient data is on those systems being used on a chargeable basis. Should patients have the right to withdraw their consent if new uses are developed that they do not approve of? The data have gone, and people are developing new uses for them, way beyond what any patient may have felt they consented to.
My right hon. Friend the shadow Health Secretary raised the issue of lack of transparency over the patient’s right to opt out. He asked about the junk mail leaflets— as they have been called—that were not even delivered to every household. What do Ministers propose to do to
explain to all patients about the extraction of their identifiable personal data, and what precisely the dissent codes mean? We touched on this in our Health Committee inquiry sessions, and it was not clear, although some people thought they knew. It is a pity that Ministers have not taken the opportunity to answer the questions that were put to them in Health questions—the information changed on the HSCIC database on the very day we had Health questions in the morning.
We know that NHS England and the HSCIC can require GPs to upload patient data in an identifiable form from every GP practice in England, to be linked with the hospital episode statistics and other datasets. That is concerning enough, because it is a powerful new use of a lot of data, but the hon. Lady suggested that the HSCIC is talking about free text. That is a concern, because that is the place where people open up to their doctor and might give information that they do not want to be shared.
It is important that we know exactly how the HSCIC is funded. In the spirit of transparency, will Ministers request full disclosure of all funding sources of the HSCIC, including outside earnings from third parties for the use of data. I have talked about seeing our hospital data now being used on a chargeable basis by companies such as BT in the US. Who pays for the HSCIC’s staff? Are staff seconded to the HSCIC? Who pays the transaction costs? We have seen examples recently of networks of private organisations coming into NHS England to write and fund reports and lead consultations. Who pays for staffing and transaction costs, if it is third parties, is a key aspect of transparency.
The Health Committee has held an initial inquiry into care.data, and I and other Committee members expressed real concerns about the scheme and the impact it could have on the trust between patient and doctor. Our concerns have been compounded by news that commercial companies have been allowed to pay for NHS patient data, and use them for purposes unknown to the public. The use of our data has gone beyond our control, the data are in other countries and uploaded to cloud servers, and we do not know where they are.