Over the past few months, even independent advocates of plans to digitize and commercialize U.K. health records have admitted that the government has bungled aspects of the implementation. Now the government is paying the price for its missteps.
The National Health Service (NHS) was due to begin adding records to the database in April, but a backlash against the project has prompted it to delay the start by at least 6 months. Pushing back the start date gives the NHS more time to convince a skeptical public of the benefits of the database. Education efforts so far have been poorly received. Leaflets were sent to 26 million homes, but polls show two-thirds of people never saw them. Campaign group medConfidential viewed the leaflets as so misleading that it took legal action. And a poll of 150,000 people by another pressure group found that 90% would opt out of the database.
"We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra 6 months," Tim Kelsey, national director for patients at NHS England, said in a statement. But it is unclear how the NHS will use its extra 6 months. So far, education efforts have focused on how the data will support lifesaving research and boost the economy. People are broadly in favor of enabling research but opposed to seeing their health records used for commercial gain.
Writing in The Guardian, physician and author Dr. Ben Goldacre accuses the team behind the database of "arrogant paternalism, crass boasts about commercial profits, a lack of clear governance, and a failure to communicate basic science properly." The failures mean even people like Goldacre and much of the scientific community who are excited by the possibilities of the database struggle to defend it from critics. Even at this late stage in implementation, the public has no idea of the guidelines that will dictate what data is shared with researchers. The knowledge vacuum has allowed conspiracy theories to blossom.