Share today, survive tomorrow

This autumn health secretary Jeremy Hunt, will deliver a full response to Caldicott2. After reading the review I found myself intrigued by chapter six, which looks at sharing anonymised patient data for medical research.

This hit a nerve with me, as I have been the subject of medical research my whole life. Growing up with a congenital condition that medical professionals knew very little about, my DNA and patient information has been sent around the world to allow research to be carried out to help future generations. I have been the subject of many medical conferences, where researchers and consultants have discussed my condition.

I had no problem with this and in some ways felt proud that simply by allowing people to have access to my information, I might be able to play a small part in making someone else’s life better. However, this got me thinking, if sharing patient information has so many benefits and is so vital to allow research to advance, why would so many object to this? Why are people not willing to share their information?

In Caldicott2, Dame Fiona Caldicott states that: “Patient information is an exceptionally valuable resource for researchers, with great potential to improve healthcare, both for individuals and populations.” Dame Fiona continues: “The aim is to both offer clinicians a better understanding of how genetic information can be used to improve diagnosis and to develop new treatments.”

The review mentions a “culture of anxiety” in sharing patient information within the healthcare sector. It says that sharing appropriately should be “the rule, not the exception.”

To me, sharing information, not only seems logical but would also prove invaluable to the health of future generations. These days it is possible to sequence DNA for a much cheaper cost, which means that there is a far higher chance that patient’s data can make a real difference. In an article published in The Guardian which discussed the sharing of anonymised genetic information, Prof Mike Stratton, director of the Sanger Institute in Cambridge said: “What has really changed over the past few years is sequencing technology. We can now sequence a million times as much DNA for the same cost as we could ten years ago. But what we’re finding is we need to share our data to maximise the knowledge we gain.”

Whilst most may be in favour of patient information integration and sharing, many are still sceptical that it could be harmful to patient confidentiality. Dr Tony Calland, head of the BMA’s ethics committee, said: “Confidentiality is the cornerstone of the doctor/patient partnership and we must do all we can to safeguard it.” I think that many people do not trust that the data will be used anonymously. So why is this? Perhaps there is just not enough accessible and understandable information explaining how the data will be used.

In chapter two of Caldicott2, Dame Fiona says: “An audit trail of everyone who has accessed a patient’s personal, confidential data should be made available in a suitable form to patients via their health and social care records.” Perhaps ensuring patients are made fully aware of how their information is being used and who has access would give them the same sense of pride I felt, in addition to putting their minds at rest.

Whilst it is true that confidentiality is extremely important when sharing data (I would not want just anyone being able to access my records), there are solutions available.

Although some of the technology that is in place in the NHS today may not have the integration capabilities needed, the technology to integrate information safely and securely is readily available. So why is the NHS not required to implement these?

The government’s £260 million “Safer Wards, Safer Hospitals” Technology Fund was announced almost a month ago. This seems like a step in the right direction in enabling trusts to purchase the technology needed to provide safe and secure integration of patient information to allow advancements in medical research.

I truly hope that Jeremy Hunt will continue to see that the benefits of research to patient health, will perhaps outweigh the fear of confidentiality breaches. In his initial response to the review he said: “The NHS must share patient data more effectively to ensure that people undergoing treatment receive the optimum care.” This looks positive and I look forward to the full response when it is delivered.

Sharing medical information will offer clinicians a better understanding of how genetic information can be used to improve diagnosis and to develop new treatments. As this can now be done safely and securely, surely it’s a no brainer?

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