U.K. begins trying to rebuild trust in patient database after months of 'confusion, suspicion and anxiety'

Tim Kelsey--Courtesy of NHS

The United Kingdom's long history of public healthcare gives it an enviable trove of patient data. Yet this resource, which is perhaps the one true competitive edge possessed by U.K. biopharma, is at risk of being squandered as the project continues to buried by mismanagement and a blizzard of negative publicity. 

Last week the team behind the database hit pause on the project for the second time. General practitioners were due to begin uploading data next month but resistance from the public, the medical community, researchers and privacy campaigners alike prompted a delay. Work to salvage the database project began this week with a committee of politicians meeting with interested parties and organizers of the initiative to understand what went wrong and what needs to be done during the 6-month delay.

The main theme to emerge was that a lot of questions remain unanswered--and unanswerable--considering the project was so close to starting. "Most people would have thought that you would develop a code of practice and develop your mechanisms before you switch the machine on. It seems like you have a half-built machine, but you have switched the machine on, and, of course, the product that comes out is very flawed and is alarming a lot of people," Conservative politician Charlotte Leslie said.

Even Tim Kelsey, the NHS director in charge of the program, acknowledged that people have some "very real issues" with the project. These issues, coupled with a failure to provide information to alleviate concerns, led to "confusion, suspicion and anxiety," Kelsey said. Kelsey and his colleagues at the Health & Social Care Information Centre now have 6 months to show they can be trusted with the data. The process got off to a terrible start when The Telegraph revealed the records of every hospital patient have been sold to insurers.

Such a sale broke the rules and apparently wouldn't happen under the new regime. Exactly who will be granted access to data and for what purpose is still unclear, though. Legislation states information can only be shared when it is "in the interests of the health service in England," but this leaves considerable scope for interpretation. As Labour politician Valerie Vaz said, "'in the interests of' has an extremely wide definition." People are worried their data will be used by insurers, and, to a lesser extent, Big Pharma.

With the U.K. due to link sequencing data from 100,000 whole human genomes to health records over the next 5 years it is vital to build public trust now. Failure to do so could scupper what should be a bright, Big Data-driven future for U.K. research. "Citizens and consumers expect organisations to be open and upfront with how their information will be used. In a digital age, this knowledge is invaluable. We must all get it right, or suffer the consequences," U.K. information commissioner Christopher Graham said in a statement.

- here's the committee transcript (PDF)
- check out the Telegraph article
- read the information commissioner's statement
- and Dr. Ben Goldacre's comments