(1 week, 3 days ago)
Lords ChamberMy Lords, it is always a pleasure to follow the thoughtful contributions of the noble Lord, Lord Hunt of Kings Heath.
I give our strong support for Amendments 12, 13 and 15, which have been so convincingly spoken to by the noble Baroness, Lady Gerada, and indeed by the noble Baronesses, Lady Finlay of Llandaff and Lady Wolf of Dulwich. Like the noble Baroness, Lady Gerada, I thank the Minister for her engagement with us on this particular issue, despite the swift passage of the Bill and the rather disappointing response during those meetings.
As I have declared at previous stages, I am the former chair of the council of Queen Mary University of London. My concern is for many of the medical students at the Queen Mary Malta Campus and Newcastle’s Malaysia campus who are affected by the Bill. That is the most pressing issue at hand: the human cost of this legislation in its current form. Over the last few weeks, we have received deeply distressed correspondence from these medical students. Many of them are British citizens who went overseas to study, precisely because of the lack of medical school places here. These students enrolled in GMC-approved courses on the explicit, documented understanding that their degrees were completely identical to those delivered in London or Newcastle, and that they would enter the UK foundation programme on equal terms. To pull the rug from under them now—changing their status to international, mid-cycle, just as they prepare to graduate—is procedurally unfair and totally unacceptable. They made irreversible life and financial decisions based on over a decade of consistent UK Government practice. We cannot treat the futures of our UK-registered university students with such disregard.
In Committee and in her subsequent letter to Peers dated 20 February, the Minister set out her reasons for resisting the inclusion of these students. On these Benches, we have listened carefully. The amendments before the House have been entirely redrafted to address and dismantle every single one of those technical concerns.
First, the Minister argued that the Government cannot control the numbers from overseas campuses, fearing a loophole that would place financial pressure on the NHS and undermine workforce planning. We can fix this. Amendment 12 would explicitly restrict eligibility to
“an overseas campus of a … UK-registered institution that is extant on the day on which this Act is passed”.
The door is firmly shut to future creep. No university can open a new campus tomorrow and exploit this route in the way that the noble Lord, Lord Patel, described.
Further, to address the Minister’s specific fear of uncontrolled numbers, Amendments 13 and 15 would grant the Secretary of State a new statutory power to explicitly cap the maximum number of eligible persons from these campuses. With roughly 50 to 70 graduates a year from Malta and around 120 from Malaysia, we are talking about fewer than 200 students in a system of over 11,000 places. They represent zero threat to workforce planning and, with this amendment, the Government would hold the lever to control the volume. From our conversations, I know that the Minister believes that this would mean opening the door to Irish university campuses and a total of 300 students because of the Windsor agreement. I hope the Minister will explain why they need to be linked when she speaks directly to Amendment 12A, in the name of the noble Lord, Lord Darzi.
Secondly, the Minister argued in her letter that these students should be excluded because they lack familiarity with local epidemiology in UK clinical placements. With the greatest respect, that argument simply does not hold water either. As the noble Baroness, Lady Gerada, with her immense medical experience, has explained, the primary conditions driving NHS demand are fundamentally the same across these nations. Crucially, these students study exactly the same curriculum, take the same UK medical licensing assessment and graduate with the identical GMC-approved primary medical qualification as their peers in the UK. We have the evidence of four graduated cohorts from Malta and those of over 10 years in Malaysia, who have transitioned seamlessly and safely into NHS practice.
As we have discussed before, if the Government truly believe that these students lack clinical familiarity, how can they justify Clause 4 of their own Bill? The Bill prioritises graduates from Switzerland, Iceland, Norway and Liechtenstein. A graduate from Liechtenstein has no UK medical degree, has not sat the UK assessments and has no training in UK epidemiology. We are told that this is due to free trade agreements requiring us to recognise comparable qualifications. It is legally and diplomatically absurd to voluntarily prioritise comparable qualifications from the EEA while rejecting identical qualifications from our own UK public universities.
Thirdly, the Minister cites the need to protect British taxpayers’ investment. The students at Queen Mary in Malta and Newcastle University in Malaysia are self-funded. They provide the NHS with fully trained, UK-aligned doctors at zero educational cost to the public purse. Turning away a pipeline of debt-free, UK-trained doctors is economically illiterate and contradicts the Government’s own value-for-money logic.
Finally, as I said at Second Reading, we risk breaking a solemn international commitment. Since 2009, the UK and Malta have operated under a unique mutual recognition agreement regarding the foundation programme, which was explicitly renewed by the Department of Health as recently as 2024. To sever this now, even in spirit, damages our bilateral relations and actively sabotages the Department for Education’s own strategy to export British higher education globally.
These amendments are safe, narrow and pragmatic, as has been described. They offer the Government exactly what they ask for—control, caps and the closure of loopholes—they protect a tiny cohort of students from unacceptable mid-term uncertainty and they honour our international agreements. I strongly urge the Minister to accept this solution.
My Lords, I apologise. I should have said that the noble Lord, Lord Darzi, emailed me at noon today to apologise that he could not be here because he had a patient to look after. However, I think the noble Baroness, Lady Finlay, covered his amendment adequately.
(6 years, 11 months ago)
Lords ChamberMy Lords, the noble Lord used the expression, “giving force”. If those principles are given force, it means that the Government treat themselves and put on the record that they are bound by those principles. That is what giving force would mean in those circumstances, because these are novel circumstances set out in the Bill. That kind of reassurance is needed with the data ethics framework.
My Lords, I had amendments that the Minister responded to at the Dispatch Box and I accepted her explanation at the time. Now I take the point that the noble Lord, Lord Clement-Jones, is trying to raise, that those principles that she enunciated about data protection included the Caldicott principles. As that reassurance was given at the Dispatch Box, I think it will cover the issue.
(8 years, 4 months ago)
Lords ChamberMy Lords, that provokes me to add something. I am not entirely clear whether we are talking about something that is too narrow within the GDPR, or whether it is a lack of a suitably wide derogation on the part of the Government as part of the Bill. For all the reasons that the two noble Lords have mentioned, it seems extraordinary that the beneficial activities that they are discussing are not included as exemptions, whether explicitly or implicitly. It may be that the Minister can give us greater comfort on that, but I am not clear what is giving rise to the problems. As we heard in earlier groupings, I am a fan of having something more explicit, if anything, in the Bill, which is particular perhaps to medical research and other forms of research in that sort of area. But it is not clear whether that is going to be permissible under the GDPR or whether the Government can actually derogate from it in those circumstances.
I shall respond to some of the points raised. First, on the research ethics committee, we established through legislation—and I remember the debates that we had—a national Research Ethics Committee to deal with all applications for biomedical research, but particularly research involving patient data and transfer of data. If I as a clinician want to do a trial, I have to apply to that committee with a full protocol as to what consent procedures and actual research there will be, and what will be the closing time of that consent. If I subsequently found the information that I had could lead to further research, or that the research that I had carried out had suddenly thrown up a next phase of research, I would have to go back to the committee and it would have to say, “Yes, that’s part of the original consent, which is satisfactory to progress with the further research”. It is a robust, nationally driven, independently chaired national ethics committee, apart from the local ethics committee that each trust will run. So the national ethics committee is the guardian.
Furthermore, there is a separate ethics committee for the 500,000 genomes project, run by the Wellcome Trust and other researchers; it is specifically for that project, for the consent issues that it obtains, the information given at the time when the subject gives the consent and how the data can be used in future. The genomes project aims to sequence all the 500,000 genomes, and to link that genome sequence data with the lifestyles that people had and diseases that they developed to identify the genes that we can subsequently use for future diagnosis and treatment—and to develop diagnostic tests that will provide early diagnosis of cancers, for instance. The future is in the diagnostic tests. Eventually we will find them for diseases which have not developed but which have a likelihood of developing. Those diagnostic tests will identify the early expression of a protein from a gene and then find a treatment to suppress that expression well before the diseases develop, rather than waiting until the cancer develops and then treating it.
All this is based on the data originally collected. At this stage, it is impossible to know where that research will lead—that is the history—apart from the clinical trials which are much more specific and you get consent for them. I realise that there is a limit to how much the text of the Bill can deviate from the GDPR, unless it is dealing with specific issues which the GDPR permits member states to provide derogations for. I realise that, post exit, the UK will need an adequacy agreement and some equivalent, neutral recognition of data protection regimes between the UK and the EU. We need that for the transfer of data. For instance, the noble Baroness, Lady Neville-Jones, has talked about extremely rare diseases, which require the exchange of data across many countries because their incidence is low and no one country could possibly have enough information on that group of patients.
The research exemption does not undermine agreement on Clause 7—which is what the noble Lord, Lord Clement-Jones, was leading up to when he asked about the ethics committee. The noble Baroness, Lady Neville-Rolfe, suggested that medical research should be possible through the research exemption, but that has to be wide enough yet not specific enough to encompass wider exemptions. I hope that the Minister will come up with that trick in an amendment which he might bring forward. It will not be restrictive, yet protect the patient’s personal interest.
There is a research exemption for processing specific categories of data, including health data. The legal basis for this is through article 9 of the GDPR, referred to in Part 1 of Schedule 1 to the Bill. However, all processing of personal data also needs an article 6 legal basis: research is not exempt from needing this. I am arguing today that research needs that exemption, defined in wide enough terms. For processing special categories, you need both an article 6 and an article 9 legal basis. We need to have provision for both in the Bill. One of the article 6 legal bases is consent and I have explained why this is not suitable for much research. The other feasible route for universities and other public bodies processing personal data for research is public interest. This is why it is so important to be clear on what processes can use this legal basis.
There was serious concern about the likely impact of the GDPR on research as it was being drafted. However, this was successfully resolved and it provides the necessary flexibility for the UK to create a data protection regime that is supportive of research in the public interest. The Government, and other UK organisations, worked hard to make sure that this was the case. The provision is there: it is now for the Government to act on it. It is also important to seek an adequacy agreement post Brexit: we will have to have one. It will be vital to consider the need to retain, post Brexit, cross-border transfers of data for research. I give the same example of rare diseases as the noble Baroness, Lady Neville-Jones, used. The Government have recognised the value of retaining a data protection regime consistent with the EU, but the research community would welcome knowing whether it will seek a status of adequacy as a third country or an equivalent agreement.
The plea I make is that unless we include a provision, and there are exemptions which can be written in the Bill in the format that is required, we will not be able to carry out much of the research. A question was asked about the life sciences industrial strategy. It is the key pillar of the Government’s industrial strategy Green Paper. It relies on data that the NHS collects and the data that the science community collects and marrying up the two to produce, and lead the world in, treatments and developing technologies. If we are not able to do this, the whole thing will be unworkable.
(14 years, 3 months ago)
Lords ChamberMy Lords, I shall speak to Amendments 127B and 197B. As they relate to pharmacy, I declare an interest as the chairman of the Council of the School of Pharmacy, University of London. The intention of these amendments is to ensure that all relevant healthcare providers, including community pharmacists, are consulted when the NHS Commissioning Board and commissioning groups are discharging their functions and developing their business and communications plans. The essence of these amendments is to retain the long-standing arrangement whereby, under the 2006 Act, commissioning bodies have to consult widely and in good time with all relevant stakeholders, including local service providers or their representatives.
Under the current system, primary care trusts are required to consult widely in relation to their commissioning duties. There is concern in the pharmacy profession that the current provisions under Clause 20, new Section 13J, for the board, and Clause 23, new Section 14V, for clinical commissioning groups, to obtain appropriate advice are too vague. It is important that consultation with all local healthcare providers should be done via local representative bodies as well as directly with providers. Clinical commissioning groups should consult pharmacy professionals when making decisions in relation to the commissioning of relevant services in order that the professional skills, knowledge and expertise of pharmacists are used in planning, commissioning, delivering and evaluating NHS services. They should also demonstrate arrangements systematically to seek the views of all appropriate local clinical groups throughout the commissioning process, in general and for particular services. This would include ensuring that all local representative committees are fully engaged in the commissioning process and signed up to the outcomes agreed.
As part of their local leadership role, clinical commissioning groups also need open and transparent processes for reconciling different professional perspectives and contingency arrangements for seeking the agreement of non-GP professional groups in the case of urgent service change. These processes should be clearly set out as part of the CCG’s governance procedures for commissioning decision-making. The above will be of particular importance in the immediate term, given the influx of new commissioners into the market, to ensure commissioners commission services effectively. Without relevant healthcare providers being consulted, the different contributions that such providers, including pharmacy, can make to local healthcare could be lost.
If used effectively, pharmacy has the potential to deliver a great deal more both to patients and commissioners. For example, it is estimated that some 57 million GP consultations each year involve minor ailments which could be dealt with at a pharmacy. If these patients could be moved to a pharmacy, more than £812 million could be saved annually, and GP capacity could be freed up to deal with more complex cases.
In summary, it is critical that there is a duty on commissioning groups, when developing their commissioning plans, to consult primary care providers such as pharmacists as there is a danger under the proposed legislation that some groups may not do so, leading to ineffective commissioning of services. At the Royal Pharmaceutical Society Conference in September, the Minister said that pharmacists are pivotal to every aspect of the Government’s plans to modernise the NHS. I find those words very encouraging and hope that he can give further encouragement in the course of this debate.
My Lords, I support the amendment of the noble Lord, Lord Warner, on patients holding their own records. Speaking from personal experience, I know that it was not uncommon in maternity services years and years ago for patients to be given their old, shared maternity card. The difference was that that card was extra to the actual notes, so what doctors and midwives wrote in those cards was probably an abbreviation.
For 25 years of my life, I allowed patients to carry their complete set of records, thus avoiding having to write another card. That meant that what you wrote and what you told the patient had to be precise, and clear thought had to be given to the purpose of writing it down. It also taught people not to use abbreviations that do not mean anything, or that might be misconstrued. It is not uncommon for doctors to use abbreviations such as SOB or NAD. They do not mean what you think they might mean. SOB stands for “Shortness of breath”, and NAD stands for “No abnormality discovered”. This also meant that when you were putting the results of diagnostic tests into the notes you were forced to explain to the patient what those results meant. If the results were ambiguous, then you had to explain to the patient what that ambiguity was. That improved the quality of record keeping, communication with the patient and the quality of care given to the patient. In 25 years of allowing thousands of my patients to carry their own notes—and some of the noble Lords sitting today are well aware of my habits—I lost only two notes. One was eaten by a dog in the patient’s house and the other was torn up after being left by the mother-to-be on a bus. Apart from that, there was no loss of notes, while in hospitals usually you can hardly find any notes.
There is a double issue here. How do we make notes that are compatible—easy to write and yet which communicate with the patient. An electronic version is better, but even a hand-written version works. I am convinced that allowing patients to carry notes is not a problem.