George Freeman says Tessa Jowell’s legacy must be faster progress with the use of data and genomics in medical research, with the Accelerated Access Reform and with innovative approaches to drug trials

19th April 2018

George Freeman calls on the Government to find a way to enable patients to easily give consent for the release of NHS health data assets to help drive research and also to improve accelerated access to innovative medicines.

May I say what a pleasure it is to follow the hon. Member for Dulwich and West Norwood (Helen Hayes)? She spoke with great passion and authority.

Thirty years ago this month, my father developed a cough and two months later he was dead from throat cancer. Being a man of that generation and age, he had never taken his health too seriously. He had never been for a check-up and had never received the care and treatment that would now follow, so what I say today is partly for dad. Eighteen months ago, I heard from a childhood friend of mine, Charlie Williams, that he had been diagnosed with the same form of brain tumour that Tessa has. Last week, Charlie posted on Facebook that he did not expect to see the next year out, so this is for Charlie.

I want to start by paying tribute to you, Tessa, for what you said in that remarkable speech. You spoke for us all, and to us all, and you spoke to the patients of this country not only with your condition, but with every other form of cancer—the patients I had a career working with who want us to make a difference for them. They want warm words, yes, and there were no words warmer than yours, Tessa, but they want us to turn the warm words into action. I believe that is the spirit in which we gather in this Chamber today, so this speech, Tessa, is for you.

Having come to this House after a career in medical research, it was my great privilege to be asked to lead, on behalf of the Government, a brain tumour research debate in Westminster Hall two years ago. I say this without a shred of criticism of my officials, who were simply doing their job, but the speech that I was given to read out said, as diligent speeches written by officials so often do, “There is no problem here. Move along. Everything is in good shape. Money is limited.” I read it with great respect, but I also listened to my colleagues with great respect, because unlike officials, we are sent to represent the people who put us here. As Tessa spoke for us all, I think it is our duty to speak always for the people who send us here.

I surprised my officials that day by announcing, as Under-Secretary of State for Life Sciences, that we would indeed create a taskforce to look into brain tumour research, never thinking that 18 months later my great friend the Secretary of State would announce £45 million of extra funding, in addition to the extra funding that he has recently announced on prostate cancer. That is a sign that, if we listen and speak on behalf of the people who put us here, we can make a difference, which is what Tessa wants us to do on her behalf and on behalf of all those people who send us here and the many patients around the country who are more impatient than anybody.

As you and patient colleagues know, Mr Speaker, I had a career in medical research. I want to highlight three important parts of this debate, the first of which is the new models of research that are coming—I was involved in my professional career in developing them. Secondly, I want to highlight the importance of patient voice in that model, and thirdly the importance of bold reforms to accelerate access to new treatments for our NHS patients.

My right hon. Friend the Member for Old Bexley and Sidcup (James Brokenshire) referred to precision medicine. The truth is that the life sciences sector that I joined 25 years ago is undergoing a profound transformation. The sector that I learned about was basically in the business of making blockbuster medicines that work for everybody. It would start with a theoretical drug target and, after 15 years, $2 billion on average and an 80% failure rate, drugs would be developed and eventually brought through regulation to the all-too-patient patients who were waiting for the approval.

In the new model, based on the genomic information that we have and phenotypic hospital records, we are able to look at a population and know which are likely to respond to the drug and which are not. We can start with the patients that we know are likely either to respond or to receive the disease, which means that we can start with the patient. With patient consent, we are able to start with their tissues, their genetics and their hospital records, and we are able not to end with a patient waiting patiently for the system to authorise a medicine, but with patients volunteering up-front to be part of that research.

It has been my privilege in my professional as well as my political career to work with inspired NHS clinicians around the country who have been leading this model. I pay tribute to the work of Cancer Research UK as an organisation, but also to Harpal Kumar, whose leadership of that organisation has been transformational.

We should be inspired by the fact that breast cancer is now 95% curable. We are within living, touching distance of cancer being a preventable disease or a treatable disease. More than 800,000 people are now living and working with cancer: it is not the death sentence that is used to be. We are in the midst of the most phenomenal revolution led by cancer. We should applaud those involved and learn the lessons of how they have managed to do it, largely through genomics and informatics.

I will share with the House a story that illustrates where the value in the new model lies. During my last project before I came to Parliament, I was working with an NHS clinician who, at the end of the meeting, pointed to a shelf in his office and asked me, “Do you think there is any value in that?” I said, “What is it?” He said, “It is all the data from a £25 million study of 250,000 women at risk of gynaecological cancer, funded by the Medical Research Council and Cancer Research UK.” I said, “What have you got?” He said, “All the blood samples, all the genetic samples, and their patient records.” “That should be the Ageing Biomarker company,” I said. “We should form a company around that asset, because it will help us to identify ageing biomarkers.”

May I place on record at this point the work that my hon. Friend has done to get us to this point? He is very modest in not saying too much about it himself—although he mentioned the Westminster Hall debate and the way in which he went out on a limb in response to it—but his understanding of the business and this fight has taken us a long way towards where we are today. I hope he can now conclude his speech as he needs to.

That is very kind. I take the hint from my hon. Friend.

The assets that we have in our health system are phenomenal assets to drive this research model, and I think it is our challenge to release them, but in order to do so, we need patient consent. However interventionist we are as Ministers, we as a system will not and cannot release data on tissues and genetics without patient voice. This research model requires us to empower patients and the charities that speak to and for them. I would like us to think about setting up disease portals in which patients can slide the consent bar on their phones, share their records, and help the charities to drive research.

Finally, we need to accelerate the uptake of innovative medicines in the system, which is what the accelerated access reform that I put together with my right hon. Friend the Secretary of State was all about. I dream of—I think we are within touching distance—a model in this country enabling the NHS to use its genomics and data to drive research. If we reform NICE to drive accelerated access, we give Tessa and the people for whom she spoke the legacy that they really want. We will make this country the leader not just of research, but of accelerated uptake of new treatments.




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