The invisible power of health data

17 Jan 2023

Describing to patients how their data saves lives can be tricky but rewarding.

Yvonne Silove, Associate Director (NCAPOP), HQIP

My friend’s elderly father has had a tough time recently, with a run of serious health problems that landed him in hospital on and o for most of the year. We’ve had many telephone conversations during this time, but there is a limit to how often you can ask ‘how are you feeling?’ when things are taking so long to improve.

Most people seem delighted when they realise that their data can be so powerful”

So, on one recent call, we talked instead about his data and how it impacts the quality of patient care. Did he know, I wondered, that he now featured in a whole smorgasbord of national data collection programmes and audits that aim to improve healthcare? “I had no idea,” he said, and I could detect a sense of pride. “What do you mean?” So I told him…

When you fell at home and broke your hip, your data went to the National Hip Fracture Database and helped the hospital to understand whether: you were admitted to the recommended ward; saw the specialist for older people; had the right operation at the right time; and whether steps were taken to consider medication to protect you from future fractures.

When they operated on your hip, you had a replacement joint fitted, so that data was also sent to the National Joint Registry. The serial numbers of your new hip were checked by the Registry to make sure they were the right ones for you, and the unique codes were stored safely, so that if any problem is identified with a component in the future, the hospital can be told and you can be reached. Your information will also be used by the hospital and the Care Quality Commission (CQC) to check that the hip replacement service at your hospital is performing safely and well.

After your hip operation, you needed an emergency laparotomy to fix a sudden blockage in your bowel caused by radiotherapy you’d had for bowel cancer some years ago. You quickly became quite unwell and the bowel surgeons were called to your ward. They used a special ‘calculator’ built into the National Emergency Laparotomy Audit to measure whether your life was at risk and to help them decide how quickly to operate. By using the audit as they planned your care, they could check and record that you went to theatre quickly enough and the right seniority of surgeon and anaesthetist were booked for your operation. The calculator also helped them to confirm that you needed a bed in the High Dependency Unit afterwards. Combined with data from similar patients, the audit plays an important role in helping hospitals, commissioners and regulators review and sustain good survival rates from this serious operation.

And before all this, when you had your original cancer treatment, your data was again used to check and report on the quality of care you, and patients like you, received. This contributed to greater under standing of healthcare services for your type of cancer as part of the National Disease Registration Service and it was also included in the National Bowel Cancer Audit.

He was amazed. It hadn’t occurred to him that his data could be so useful. As a scientist himself, he loved that he was providing evidence that helped both him and other patients in the future. I mentioned how interested people are these days in where their data is held and how it is used, and how people generally find it easier to understand how their personal details and health information are shared so they can receive treatment. They tend to be less aware of these other types of important uses, although most people seem delighted when they realise that their data can be so powerful.

By way of example, we talked about his new hip again. I explained that the National Joint Registry also uses his identifiable information so that if, for example, he has a complication with his new hip treated in another hospital, then his Registry record can be updated through a process of ‘data linkage’ using data submitted from other hospitals and from national datasets such as the national register of deaths. For now, the audits and registries use things like his name, date of birth and NHS number to link up the records coming from different places (though his personal details are removed before the data is analysed and reports are written).

Data saves lives – and the government thinks so too”

He then asked if people wonder whether they gave consent for their data to be shared and used, and if not, was it still included? Answering that question is fairly complicated. Where possible, people are asked for their consent, but taking consent for so many, sometimes quite ill patients, often can’t be achieved in practice without disrupting their medical care. So, there are provisions in law to allow that ‘duty of confidentiality’ that all patients are owed, to be legally set aside (in fact, HQIP made a film about how that works!). Sensing some confusion, I ploughed on, trying to explain as clearly as I could…

Data that identifies us that is used for our own, individual health care can be used without asking for our consent because it is recognised that is what patients reasonably expect would happen. But when data is used in national projects to help measure and improve the services that treat us, then either people must be asked for their consent or there must be a specific legal provision that means the requirement to ask for consent will not apply.

However, there is a way for people to register to exclude themselves from one of these legal provisions, and so prevent their data being used for planning and research without their consent. This is known as the national data opt out. But this can be problematic, because the ‘line’ is sometimes really hard to draw. By preventing data being used for research and planning, it is possible that the mechanisms to safeguard the person’s own, safe care or the safe care of others could be compromised. This is why HQIP, our audits and the National Joint Registry made the case that national data opt-out out should not apply to our national audits and registries in cases where this might happen.

I paused, trying to think how to relate this back to my friend and his own experience. “If your team couldn’t use your data to learn that the number of deaths in the emergency bowel surgery service was creeping up, or to calculate whether theatres were sta ed correctly and ITU beds were available, then how could they take the steps they needed to make sure the next patient’s care was delivered safely? After all, given your penchant for popping up in so many of the audits, that next patient might be you!” He laughed, and then sighed: “Right, well you’ve lost me now with all this consent, setting aside and opting out. I think I’m just going to focus on how my data can help save my life and that of other patients in the future. I guess I hadn’t thought about the sorts of things that might not happen if my data couldn’t be used. I know some people are really worried about their data, but I’m also worried about being treated by a service that doesn’t have all the data it needs to keep doing a great job.” I agreed: ‘‘Data saves lives – and the government thinks so too, as that’s what they have named their new 2022 health and social care data policy.”

”I’m so glad,” he said. “Over all these months of the NHS looking after me, I’ve been helping them too – and I didn’t even realise!”