Slow and costly access to anonymised patient data impedes academic research

I could not have afforded the £1889

The first surprise was that information about public healthcare in England had to be paid for, even though the NHS is publicly funded. My supervisor and I got an internal grant from the university, without which I could not have afforded the £1889.

The second surprise was how long it took. By August 2014 I had still not received any data. There was a long queue for applications to be processed: nothing happened for more than two months. Then the committee questioned the study’s aims and objectives, on the grounds that a cross country comparison would not benefit patients in England, and it refused to provide the data.

We finally got approval after a long struggle that involved my supervisor having to write detailed notes. Then, however, the HSCIC would not supply the data extract we asked for because it was “under pressure not to release big extracts of data,” even though the data were anonymised as they had been in Scotland and Brazil.

We had to compromise and accept only tabulated data extracts instead of raw data, reducing the research possibilities; but the data asset owner—the person ethically responsible for keeping data under the HSCIC regulatory framework—still would not agree to release the data. Once again, the committee questioned the benefits of the study. Different HSCIC departments did not agree about the potential benefits of my research, and finally we were asked to liaise with all of the departments to ask them to come to an agreement internally.

In January 2015 HSCIC finally approved the application with minor amendments, but our struggles were not over: HSCIC requires that all university computer servers comply with its “governance toolkit,” a set of policy requirements. My university took two months to conform, but it still has no internal protocol for this kind of contract, and—14 months after the request and in the final year of my PhD—I am still waiting for the data to be released.

Grants stopped

So far this has taken more than 90 emails and more than 30 telephone calls, and I am still trying to resolve the issue despite my tight PhD schedule. I have had to ask for a one year extension from the Brazilian funders, at great cost to me and to them. I have heard similar stories throughout England, such as grants from the National Institute for Health Research being stopped because researchers cannot deliver the outcomes required.

For more than 50 years, junior researchers like me have been able to undertake important work in the UK at no cost to ourselves and for the benefit of society. It seems as though the HSCIC has forgotten its public purpose, so intent is it on chasing the market and exploiting patient data for commercial gain.1 Like all researchers, I simply want to improve the system as a whole—but, without good access to anonymised patient data, we cannot do this.