GP data access – a cancer patient’s view
Like millions of others that have lived through cancer, I am only alive today because of research conducted in cancer surgery and chemotherapy years previously. In the same way that I have personally benefited from cancer research because other patients were willing to share their health information, I feel a moral duty to share my own health data as it may help someone like me. This data includes my de-identified GP records to help future cancer patients receive earlier diagnoses and smarter kinder treatments.
Because of our very personal experiences, and as direct beneficiaries of data research, members of the DATA-CAN Patient and Public Involvement and Engagement group have been increasingly concerned by some of the recent confusion around NHS Digital’s plans to improve the way that data from general practices is collected and made available to researchers through the GP Data for Planning and Research (GPDPR) initiative.
Let’s be clear – this is not a new ‘data grab’ as it has been described by some. The legitimate sharing of de-identified GP data for approved research has been going on for many years. Similarly, the NHS does not provide patient data to just anyone, but only to approved organisations for defined and approved research purposes.
There are many direct benefits to all patients from sharing this data for approved research. Professor Willie Hamilton, a renowned GP and cancer researcher focusing on early diagnosis, told me recently:
“I have been directly involved in over 50 research studies based on anonymised patient data from GP practices. In turn, this research helps to provide evidence to the National Institute for Clinical Excellence (NICE) when they are producing guidance for GPs to help them identify cancer earlier, when it’s easier to cure. So many lives have been saved by this type of research.”
There are other examples of the direct benefits to patients of using health data in cancer research on our webpages, including a study led by Professor Hamilton to identify the main symptoms of ovarian cancer, also known as the ‘silent killer’, that women presented to their GP with. This research has helped to improve earlier diagnosis for women with ovarian cancer, therefore saving lives. In addition, DATA-CAN’s work with University College London on the effects of the Covid-19 pandemic on cancer services and patients, that used data from cancer centres across the UK, had a far-reaching impact, including contributing to the NHS’s decision to restore cancer services in 2020.
Surveys reveal that overall most patients are happy for their health data to be shared to help the NHS provide new treatments for patients. This is backed up by the cancer patients and carers involved in DATA-CAN:
“As a cancer patient I am unhappy to find that the UK falls behind most European countries in its ability to save the lives of some cancer patients. I am hopeful that improved access to GP data will help to find the answer to the question Why?” Libby Cooper
“All relevant data held by the NHS should be made available for research purposes, including that held within primary care. Early diagnosis is the key to the survival rate of patients with cancer, and referrals from Primary Care are vital to early diagnosis. Research into the data held within Primary Care may be an important factor in saving lives.” John Barnes
However, media coverage and chats with friends and neighbours make clear that there is potentially a large gap between the views of ‘patients’ and the views of the ‘general public’ on GP data sharing. One of my PPIE colleagues at DATA-CAN expressed some concerns about the implementation of the proposed scheme:
“Sharing de-identified data has the potential to benefit us all. However, I was concerned about the lack of transparency and public information about the implementation of the central NHS digital database from GP records.” Alison Allam
This is why we are very supportive of the recent announcement to delay the implementation of the GPDPR from 1 July to 1 September* so that patients and the public have more time to learn about the proposal. Equally, those individuals who, for their own reasons, prefer that their data is not shared outside of their GP practice should be supported in their right to opt-out.
My message is simple. When used effectively and responsibly, health data can saves lives. And with one in two people developing cancer in their lifetime, the benefits to future cancer patients are clear to see. We would urge everyone, patients and the public, to get the facts first. Read our case studies on the benefits to patients of using health data and, most importantly, read the information on the proposal for sharing of GP data provided by NHS Digital.
Each and every one of us should make an informed choice regarding the use of our data. For me personally, I am clear that I wouldn’t be here today without vital cancer research using health data. #DataSavesLives
By Pete Wheatstone, Chair of the DATA-CAN Patient and Public Involvement and Engagement Group
* In a letter dated 19 July 2021, the Parliamentary Under Secretary of State for Health and Social Care, Jo Churchill, set out a new process for commencing data collection, moving away from a previously fixed date of 1 September. Read more about this here.