We need your support to keep TheyWorkForYou running and make sure people across the UK can continue to hold their elected representatives to account.Donate to our crowdfunder
My Lords, it is a great pleasure for me to follow the noble Lord’s excellent and visionary speech. First, I declare an interest as president of GS1, the barcoding association, which is involved with the department of health and the Scan4Safety and procurement efficiency programmes.
The noble Lord spoke with great force, all the more for being a patient advocate. Clearly, the opportunities that we have through the effective use of data must be seen not just in terms of a contribution to UK plc but, crucially, in terms of better outcomes for patients. I wholly endorse what he says. I like the concept of making the most of the value that can be generated through the use of this important data, and of taking full advantage of it as a health service and as a country. However, we face a conundrum, which is the public’s attitude to the use of their data.
The noble Lord said—and I agree—that we should put trust in patient demands to have their data used to full effect and for it to be regarded as unethical if it is not. He went on to say that we should engage patient representative groups, clinicians and the wider public sector, as well as the general public, in establishing the priorities for using healthcare data and reinvesting its value. He also said at a later stage that if the public want to opt out of allowing their data to be used in the ways that it can be, that must be respected. That is crucial.
We know from the work of the Parliamentary Office of Science and Technology, among others, that public trust in the governance of data is considered to be crucial to the use and expanded use of medical records for health research and management. We also know from surveys that the public are strongly in favour of the use of this data, but concerns remain. These are about the use of data without consent, the use of identifiable data, data security, a lack of transparency, potential discrimination by employers or insurance companies, and access by commercial organisations. Because of those concerns, some patients might withhold information from healthcare providers, and that of course could well be detrimental to their own health and that of other patients and to the quality of the data being collected.
The King’s Fund analysed the implications of these developments and said that it felt that national policy has been to keep a balance between responding to legitimate public concern about security and confidentiality of data, and enabling data to be shared and used by NHS organisations and third parties. I think that that is the right approach. Of course, you run into problems when you see previous attempts at data sharing in the NHS, such as Care.data, which was an unmitigated disaster. More recently, thousands of pieces of information about data were leaked by companies this summer, I think in July.
The problem is that other instances which may occur in the future will or could reduce public confidence. Is the Minister confident that the NHS is in a fit state? I take note of the Secretary of State’s comments this morning about the lack of progress that has been made in the use of IT generally in the health service. Is the Minister really confident that the service can tell the public that their data is secure? Secondly, can he deal with the problem that the public are finding that trying to opt out of certain information collections is becoming more difficult? I am indebted to medConfidential for this information. My understanding is that post GDPR and post new opt-outs, NHS Digital’s release register confirms that in two-thirds of releases patient opt-outs are ignored.
I shall give another example. There is no way apparently for a parent to make a consent choice for their dependent child using the online service. Instead, NHS Digital tells parents to send four forms of ID by post to their processing centre and that it will consider the request. I am fully behind efforts to use NHS information to the fullest extent and to make the most value out of it, but we will go down a wrong path if we make it difficult for the public to opt out where they want to do so. We know what will happen if there is a campaign— campaigns have been run previously. Care.data was a great example of a campaign run by a media outlet which has had a negative impact on the development of shared medical records within primary care. It may be painful, but more work and more ability for patients to opt out will in the end lead to the noble Lord’s vision being achieved.