After five years as chair (and several more as a member before that), Dr Mark Taylor is stepping down from the Confidentiality Advisory Group.
As Dr Taylor leaves to take on a new role at Melbourne Law School in Australia, he describes how the group gave him a fresh insight into discussions of how the privacy of patients sits alongside the public interest.
The Confidentiality Advisory Group
CAG provides independent expert advice on the appropriate use of confidential patient information. The law recognises that there is important medical research and essential NHS activity beyond individual direct care that requires the use of identifiable patient and service user information, but where it is not always practical to obtain consent. CAG’s role includes considering applications for access to confidential patient information, while protecting and promoting the interests of patients and the public. The group also a statutory role to advise NHS Digital on dissemination issues.
“I’ve always been academically interested in privacy, understanding the relationship between the state and private individuals, and looking at the question of the extent to which the state can legitimately interfere in the privacy of private individuals alongside its responsibilities to protect individual privacy.
“But patient information rights wasn’t an area I’d thought to look into, until a colleague spotted an advert in the paper for people to join the Patient Information Advisory Group, and told me I should get involved. That group would go on to become the Ethics and Confidentiality Committee and ultimately CAG.”
“My interest has always been in the idea of the public interest and its conceptual connection with an individual’s privacy right. What I quickly found was that the health arena brought to life this connection in fantastic case studies, where there was a real need to establish a proper relationship between individual privacy and the public interest.
“It was a steep learning curve. I had no idea how complicated the NHS was, and how many acronyms I’d learn. It was a language and a world not familiar to me. I was unaware of the extent that data flows in the NHS, the need for it to flow, and the volume of data required to make the NHS work. I hadn’t given it any thought before.
“Our job in CAG is to get into the detail that people don’t have the opportunity to consider in their busy lives. We’re considering the issues on their behalf.
“It is a responsibility to be acting on behalf of a patient, and to try and put oneself in her or his shoes and support what they would if asked. The role of the group is to consider the privacy of the patient alongside the public interest, and over time I’ve developed my understanding of the public interest to appreciate the two don’t always compete. There is a public interest in patient privacy itself. Protecting privacy and the public interest is about protecting patient expectations of acceptable use.
“That doesn’t mean denying all access. Patients want information to be used appropriately. They appreciate it informs their own care, they want high quality health care and understand that generally relies on a use of data. What we see in CAG is research that has the potential to improve health care, that requires data and that otherwise wouldn’t happen.
“The group meets twice a month, and like most members I’ll usually attend one of those meetings, with my vice chair team supporting the other. Typically we’ll look at six or seven new applications, covering anything from a request from researchers to look at readmission rates for mental health patients to a company looking to audit whether CCGs are being overcharged.
“All the applications require some careful consideration. The fact it has come to the committee means nothing can be assumed to be straightforward, and often those applications that I might think are going to be more straightforward turn out to be more complex, as other committee members spot aspects I’ve missed.
“That breadth of expertise and experience is one of the most valuable things about the experience with CAG. We’ve been lucky over the years to have many excellent members, both lay and expert, and that leads to some robust and illuminating discussions. Some of the most interesting cases are those where you get to see how that group of people, all with different expertise, can start off with different views, and then through discussion and dialogue back and forth work to a consensus.
“It’s been a pleasure to have contributed to the group over the past ten years and to have chaired it for five. It is challenging work, but an opportunity to learn a great deal, and always in a supportive environment. Ultimately this is a group with a public service motivation to enable excellent research and other medical purposes that patients would support, and that otherwise wouldn’t happen. It’s been a privilege being part of that.”