OECD urges Denmark to get its primary care database back online
It was axed in 2014 following concerns about privacy breaches and a legal technicality which said it did not meet the definition of a clinical database.
A deal to restore the DAMD is currently being negotiated in the Danish parliament, with input from national doctors’ and patients’ groups. It is expected data will start to be collected again by October 1, starting with diabetes and chronic obstructive pulmonary disease.
Now the OECD is weighing in. A report published on March 3, says the loss of transparency is undermining reforms of the healthcare system initiated in 2007, and is a threat to future improvement.
Before its suspension, DAMD was ranked as one of the best databases of primary care outcomes in the world, an “unusual” innovation according to the OECD.
But in 2014, regional authorities deleted most of the data after state-owned Danmarks Radio uncovered it collected illegal information about sexually transmitted diseases, anxiety attacks and personal problems of patients.
The Danish Medical Association (PLO) voiced its concerns that registries were “sensitive and [had] personally identifiable information,” saying other statutory authorities, politicians and pharmaceutical companies should not have access to it.
The result is that patients cannot access their medical records, which were previously available at a national online site, sundhed.dk. Only disease-specific information, in diabetes, chronic obstructive pulmonary disease (COPD), heart failure and depression, remains available.
For the OECD, this is a “major reversal of transparency and public accountability - areas in which Danish health system had previously been a global leader.”
Denmark is not the only country that has been involved in controversies over data patient ownership. In the UK, a recent study criticises the deal between Google and the Royal Free Hospital in London, to use NHS data of 1.6 million patients to create an app to alert clinicians to cases of acute kidney injury.
The paper says the collaboration, “Has suffered from a lack of clarity and openness, with issues of privacy and power.” ■