The OECD is calling on Denmark to restore the Danish General Practice Database (DAMD), which 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.”
More embarrassing was the decision in 2016 to scrap an NHS England programme Care.data, which aimed to develop a centralised database of anonymised patient information, extracted from general practitioner records. The decision followed a review of the controversial project that concluded, “the public does trust the NHS with confidential data.”
Similarly, last week in Portugal, an Excel file found online included data from 230,000 patients from the islands of Azores, Exame Informática reported. The spreadsheet included names, addresses, date of birts and phone numbers. Experts consulted by the magazine say it could have been online up to a year.
The Danish parliament agreed last month on the principles that should govern the new DAMD, in which patients would own their own data and use of personally identifiable data would be limited. The proposal also stress that Danes should know what their records are used for and why.
Patients agree with the new proposal. “Data security is crucial for having public support to collect and use health data to the maximum benefit of all levels”, says Morten Freil, director of Danish Patients, an umbrella association representing 870,000 patients in a country with a population of 5.6 million.
Doctors also think it is a step in the right direction, but confidentiality must be kept under surveillance. “The health minister and the regions [should] ensure that patients get the detailed information about the use of health data, as the agreement states,” says Andreas Rudkjøbing, president of PLO.
The OECD says bringing back DAMD will allow Denmark to deal with other pressing issues, and in particular the national and international comparison of the performance of primary care practitioners.
Patients should be able to compare performance of different centres, as is the case in UK and Portugal, the report says. “Greater transparency on the quality and outcomes achieved in primary care is Denmark’s most urgent need.”
In addition, Denmark should implement OECD Health Care Indicators, so that primary care indicators can be crossed-referenced with those from peer countries including Sweden and Norway.