Care Bill [Lords]

Jim Shannon Excerpts

Tuesday 11th March 2014 Commons Chamber

My final point is that it is vital that the relationship of trust between a patient and a doctor is not lost. To ensure that that does not happen, patients must feel that their personal information that they disclose to a doctor will remain confidential. I do not think that people have that confidence at the moment, and much needs to happen to make sure that they will.

[Jim Shannon (Strangford) (DUP)]

I was under the illusion that there would be five speakers ahead of me, but I am none the less pleased to make some comments on amendments (a) and (b) to Government new clause 34, and on new clause 25. I thank the hon. Member for Totnes (Dr Wollaston) for setting the scene, and the hon. Member for Worsley and Eccles South (Barbara Keeley) for her contribution.

My inbox, like many others, has been full with messages from various charities on different aspects of the Bill. Having sat on the Care Public Bill Committee, I can well understand many of their concerns. I received a briefing from Cancer Research UK, as many other Members did. It was informative and clear, and raised points that I do not believe have been addressed in the Bill and require greater clarity through amendment.

Along with Cancer Research UK, I warmly welcome the clauses that will introduce the Health Research Authority as a non-departmental government body. I have the highest respect for the Minister, but last night clarity on this was sought by the shadow Secretary of State, the right hon. Member for Leigh (Andy Burnham), the hon. Members for Easington (Grahame M. Morris) and for Worsley and Eccles South (Barbara Keeley) and me. With respect, I do not think that Hansard gives the clarification that right hon. and hon. Members, Cancer Research UK and Macmillan are seeking. I am hopeful that the Minister will today be able to give us that assurance and clarity.

Clarification of the amendment of section 261 of the Health and Social Care Act 2012 is needed to ensure that access to data for research is not restricted on the basis of the amendment. Cancer Research UK states:

“While we appreciate the context of this amendment and understand that the motive behind it is to avoid inappropriate disclosures of data, we are concerned that the wording of this is unclear. We would like reassurance that access to data for researchers is included under ‘provision of health care and adult social care’ and that access to research data will not be restricted on the basis of this amendment.”

I hope the Minister will be able to provide assurance on that.

Cancer Research UK is one of the largest funders of clinical research in the United Kingdom of Great Britain and Northern Ireland. It is currently running more than 240 clinical trials, which in 2012 recruited some 37,000 patients. Clinical research is important to find drugs that work and treatment that saves lives. Today in Westminster Hall, we were made aware that with better access to new cancer drugs, 5,000 more people would be alive today and that many more lives could be saved. It is essential that we develop an understanding of both new and existing treatments, and that they are offered through the NHS. We therefore want to see a regulation and governance system in the NHS that promotes and supports research, while also protecting patients.

There has been significant controversy surrounding the proposed care data upload of GP records to the Health and Social Care Information Centre and there have been at least two debates in Westminster Hall on these issues where Members have expressed their concerns strongly. Concerns have been expressed that the public have been insufficiently informed about this upload and that data may be released inappropriately, for example to insurance or marketing companies. I know the Minister replied last night to my intervention, but the doubt lingers even today within Cancer Research UK, Macmillan Care and other charities that had expressed initial concerns. I have concerns regarding the nature of the release, but it was never my intention to restrict data going to the likes of Macmillan or Cancer Research UK to aid in their fight against the scourge of cancer.

[Barbara Keeley]

I read a blog article this morning written from the point of view of people with disabilities who had real concerns about the mention of insurance providers. It is often very difficult for people with serious conditions to get insurance, even travel insurance, and the notion that their medical data are being linked to insurance information, or might be sold in future to companies that are insurance providers—even if those are health and social care providers—is a real worry for them. They are really fearful about this and I think we would see a mass opt-out by people who have that fear.

[Jim Shannon]

That is the issue, summed up in a couple of sentences. The Minister may look to his civil servants for some direction; he may have it already. If so, that is good news.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

May I reiterate what I said many times in my opening remarks, which I hope will be helpful to the hon. Gentleman? Clear safeguards are being put in place to ensure that the data cannot be used for insurance purposes. I give that reassurance again today.

[Jim Shannon]

Earlier I referred to Macmillan and to Cancer Research UK who, even today, are not convinced. We make these points on behalf of our constituents and the groups that lobby us.

[Dr Wollaston]

Does the hon. Gentleman agree with many commentators, including the British Medical Association, that it would help if the remit of the confidentiality advisory group could be extended from currently just looking at patient-identifiable data to looking at pseudonymised data or potentially identifiable data? That would give further reassurance that there is more oversight so that we do not see the kind of instances that many people are expressing concerns about.

[Jim Shannon]

The hon. Lady is right that the amendments would go a long way to addressing that issue. I hope that the Government take that on board.

In response to the fears expressed by many, several amendments were tabled to clarify the circumstances in which the Health and Social Care Information Centre will be able to release data. We need further clarification of the provisions concerning the dissemination of information, which suggest that the information centre may disseminate it only if it considers that doing so would be for the purposes of the provision of health care and adult social care. Clarification is needed for those charities that have contacted many of us in the Chamber. Cancer Research UK, among other worthy causes, would like reassurance that access to data for research is included on the

“provision of health care and adult social care”

and that access to research data will not be restricted on the basis of the amendment. That is the reason I support the proposals.

Cancer Research UK has said that it particularly welcomes the Government’s inclusion of proposals that would give the Health Research Authority the ability to accept guidance on how the governance of particular research should be handled by the NHS trusts and their duty to adhere to it. These proposals were added following calls from Cancer Research UK and the medical research sector, and were supported by many parliamentarians during the pre-legislative scrutiny of the Bill of which I, with others, was a part.

Governance continues to be the primary barrier to conducting research in the NHS. A single trial can take place across multiple trusts, so obtaining governance approvals from each participating trust, which may have different approval criteria and often duplicate checks, can cause significant delays. New clause 25 would put in the Bill the firmness, accountability and legislative control that is necessary to ensure that the leakage, for want of a better word, of information does not take place. It is important that we do that.

In conclusion, statistics indicate that by 2020 one in two people will get cancer. We had a debate in Westminster Hall this morning on cancer care; it was passionate and well thought out by many Members with personal experience of cancer in their families and their constituencies. The enormity of cancer and what it will do to society is why we have a responsibility in the House to ensure that we help. The need for research and new treatments for cancer is greater now than ever. We must ensure that while protecting people from the unsafe or mercenary use of personal information, we are not hampering the fantastic work done by these charities to discover more about cancer and to help more people win their personal battle. I support these amendments and I ask the House to do the same.

[Sarah Newton]

It is a great honour to follow the hon. Member for Strangford (Jim Shannon), who touched on an incredibly important point: we must not forget the people whose lives have already been transformed by research organisations’ access to data to find cures and prevention for diseases such as cancer. There cannot be anyone in the House who has not been touched by cancer, personally or within their families. It is incumbent on us all to do everything we can to create the right ecosystem and regulatory environment to enable research that will have a life-saving and transformative effect for people.