What we don't know about the UK's health - a new report
How many people in the UK were diagnosed with endometriosis last year? It’s important that someone knows the answer. But when the Government was asked, they said this data wasn’t collected.
Similar gaps exist all across the healthcare system, often for surprisingly basic operational questions, or for conditions that affect many people. We set out to map these data gaps, and have released a new report on our findings.
A ‘data gap’ is essentially an important question that the Government can’t answer. For example, it would be concerning if the Government didn’t know how much money the country had. That’s not the case. But there are basic things we don’t know about our healthcare system.
Spotting these gaps, though, can be tricky. So we thought: what if key healthcare stakeholders keep asking the same questions, but aren’t receiving any answers? If we could find those questions, we would know which gaps are most harmful to these stakeholders’ work, and ultimately most harmful to patients’ health.
To this end, we spoke to numerous healthcare charities, looked through nearly 200 major independent reports, and analysed more than 2,500 Parliamentary Questions that MPs have asked the Department for Health and Social Care (DHSC) since 2019.
We found three major areas where charities, regulators and MPs repeatedly struggle to get answers:
The NHS workforce. Without knowing how many staff the NHS has, or what they do, the government can’t ensure safe staffing levels, or plan for the future. But there are surprisingly basic gaps in available workforce data, from the number of specialists employed to the number of vacancies. For example, DHSC could not say how many nurses had been recruited by the NHS in the last few years.
The prevalence of certain conditions. Another surprising gap is simply “how many people are diagnosed with a particular condition”? This seems to particularly affect conditions diagnosed outside of hospitals, such as dyslexia, chickenpox, and eczema. Without this basic prevalence data, users cannot track health needs or tackle inequalities. Yet, for example, DHSC could not say how many people had been diagnosed with motor neurone disease or multiple sclerosis.
Waiting times. Healthcare stakeholders need to know about waiting times to understand supply and demand for particular services, and spot where services are failing. But waiting time data is often missing, or less granular than is useful. For example, 75% of NHS providers could not supply data on their own waiting times for an ADHD diagnosis.
These gaps are not abstract problems. They often mean charities have to pay for basic data, which leaves them less money to help people. And they stop the Government from investing in the areas of health that need it most, which negatively affects the nations’ wellbeing.
The Health and Social Care Statistics Leadership Forum recently opened a consultation into health and social care statistical outputs. Our report recommends that DHSC prioritise filling these gaps as part of this review, so that charities, regulators and the NHS have the data they need to care for the UK effectively.
We're pleased to see that the recent Lievesley Review calls for the UK’s statistics to meet the needs of a broader range of users. We hope this kind of research is useful for identifying gaps that affect the third sector, MPs and regulators, in pursuit of this wider goal.
We are very grateful to the many people who shared their expertise with us during this project - their knowledge and guidance was invaluable. If you’d like to know more about the gaps, read our full report. And if you’d like to chat about data gaps further, please get in touch at contact@centreforpublicdata.org.