Commissioners need to be able to use patient data

How much information about yourself do you share every day that you would have considered highly personal five or 10 years ago? In the digital era, with frequent prompts to log personal details, from credit card numbers to the name of your first pet, we must all make sensible judgements about “confidentiality” if we want to be better served. The NHS is the same.

‘Confidential data used by commissioners for purposes other than treating patients must remain subject to stringent security’

Better intelligence and informatics has produced significant benefits for society in recent years. Terrorist plots have been foiled with the help of the Government Communications Headquarters; retailer loyalty schemes have made consumers more powerful and improved companies’ margins; and most of us would struggle if we weren’t able to bank, book holidays or shop online.

I welcome Dame Fiona Caldicott’s information governance review for its commitment to striking a more appropriate balance between promoting data sharing and safeguarding patient confidentiality. However, in relation to commissioning, I am concerned that it is not forward looking enough.

If fledgling commissioners are denied access to patient-identifiable data, some gains made in recent years will be lost before the new clinical commissioning groups find their feet. Specifically, it could hamstring their efforts to redesign care and would get in the way of measures to unlock efficiencies, which are there for the taking. 

Airbrushing out difficulties

When it comes to data sharing, the government has to make certain choices on our behalf: passports identify individuals and personal details because of security and migration issues; benefits claimants must be identifiable for accountability and eligibility reasons; taxpayers have to be completely explicit about their affairs, including overseas bank accounts, to ensure we all contribute fully to society’s finances. Domestic security and fraud effectively trump worries over anonymity.

Surely the commitment to improving our NHS by putting GPs in charge must pass a similar test of what is in the “public interest”? 

‘So far as the NHS is concerned, meaningful information is not merely nice to have: it is essential’

Today, the NHS does not routinely disguise patient-identifiable data when compiling the datasets used for commissioning. Introducing this technique − known as psuedonomysation − would meet all the concerns expressed in Caldicott’s review by ensuring that individuals’ personal details cannot be shared accidentally.

Confidential data used by commissioners for purposes other than treating patients must remain subject to stringent security. However, while the NHS may not yet have universal standards like the requirements enforced in the US under the Health Insurance Portability and Accountability Act, imagining that difficulties should be airbrushed away by removing all “confidential” data from the system would be folly.

Source of intelligence

Commissioners and those who work for them do not have a “right” or any special entitlement to patient-level-data. But they need it in order to do their job properly: to produce benefits for patients and taxpayers. 

We need a proper debate on the practical implications of not allowing commissioners to handle patient-level data. So far as the NHS is concerned, meaningful information is not merely nice to have: it is essential.

‘Commissioners need insights based on hard facts to do their job’

When I started out in healthcare decades ago, the NHS measured its outcomes as “deaths and discharges”, and waiting lists consisted of “cases”. Only when the system helped clinicians audit data about the care delivered to individuals did results improve dramatically; and waiting times of two years (and more) only became a thing  of the past when managers got beyond the statistics and gave “cases” their names back, and organised personal treatment plans which guaranteed an early date for their operation.

Any debate about data sharing in the NHS must focus on treating the patient and protecting the person; but it should also be about ambition, not lowest common denominators. Cutting off the very source of intelligence for commissioners − patient-level data − should be seen for what it is: a disservice to patients and taxpayers alike.

Commissioners need to get specific; not personal, because they are guardians of scarce, precious and costly resources that we expect them to manage on our behalf. They need insights based on hard facts to do their job.

Anthony McKeever is chief executive at MedeAnalytics