‘Big data’ at heart of doctor conflict

GPs are concerned the government is using labour conflict to introduce a law that will force them to hand over more valuable patient data to sell on to the pharmaceutical industry

Doctors working as general practitioners (GPs) are accusing the government of pursuing a hidden agenda in the on-going conflict over proposed changes to their working conditions.

GPs and Danske Regioner, the association of regional councils, which are responsible for managing healthcare, were unable to agree on a replacement for the contract that expires this September, despite a year of negotiations.

In May the government intervened and presented a law that outlined conditions GPs would have to accept in order to continue providing state-funded healthcare to their patients.

The health minister, Astrid Krag (Socialistisk Folkeparti), argued that GPs are not carrying out enough follow-up care, failing to stick to standard diagnostic practices and refusing to live in thinly populated and unattractive parts of the country.

But Imran Rashid, a GP in Copenhagen’s Kastrup district, argued that Krag is more interested in something else entirely: data.

“When the government presented the bill, Krag argued that the government needed more data in order to check that they were getting what they were paying for,” Rashid told The Copenhagen Post. “But the government has already launched a plan to sell more Danish health data to the medical and pharmaceutical industry. I am afraid that’s the real hidden agenda.”

Rashid pointed out that in April 2012 the government established a committee of public and private sector organisations to examine the potential for growth in the medical and pharmaceutical industry.

This January, the committee concluded that the health data that is currently gathered by hospitals and clinics about their patients, so-called ‘big data’, is an enormously valuable resource for these industries.

“The demand for health data from Danish and international businesses is expected to rise over the coming years. The health registers are expected to attract research and development investments which could create growth,” the committee stated in the report.

They add that this year the Health Ministry is expected to finalise a national strategy for allowing public and private sector organisations access to anonymised clinical and administrative data collected by the health service. 

“The goal is to make Denmark the global leader in applying health data and making it commercially available. The strategy will improve access for the health service, educational and research institutions and businesses to health data to support business and growth opportunities.”

The government has argued that GPs are the health service’s weak link and provide far less patient information than hospitals. The new law demands that GPs provide far more comprehensive information about their patients, but Rashid argued that, as the law stands, the government has too much power and unclear intentions.

“If a company wants to know the eye colours of diabetic, pregnant women, for example, Krag can turn around and tell us to register these details, and if not she could fine us,” Rashid said.

Ingrid Trinignac, a GP from Frederiksberg, agreed with Rashid that the government is looking to exploit health data as a way to make money.

“The government has said that patients’ data will be used to ensure a consistent treatment and to check the invoicing by doctors [but it] will instead be used to create growth through sales to commercial businesses,” Trinignac wrote in a comment to The Copenhagen Post. “It’s a completely different agenda, and it is one they are not interested in including in the public debate.”

Trinignac also pointed to experts who questioned whether the data could truly be anonymised, as the government has promised it can.

“Just because you remove names and social security numbers it does not mean that the data is anonymised,” Niels Elgaard Larsen, chairman of the internet and IT advocacy group IT-Politisk Forening, told the magazine Computerworld. “Information about gender, weight, height and treatment forms will be unique to certain patients.”

Rashid expects that questions about privacy will start to pile up as more personal information is made available, which could lead patients to hesitate about visiting their doctor.

"The doctor-patient relationship is based on trust, but if there is uncertainty whether their personal data can be kept confidential, it may impact treatment,” Rashid said, adding that GPs’ suspicion that the government isn’t being totally honest about their true intentions has fostered distrust with some.

“The extra data collection may not prove to be such a burden, we just don’t know yet, but working under a law whose focus is government profit, not the health of patients, creates simply too much uncertainty,” Rashid said. “I’m worried that the purpose of my work will be to collect data to be sold. They need to come clean with their agenda so I can decide whether or not to work under their premises."

Rashid is among the 90 percent of GPs who are so concerned about the effects of the new working conditions that are written into the law that they have threatened to stop working as government healthcare providers in September when their current contract runs out.

But after a month of uncertainty over who will provide frontline healthcare come September, GPs and the government now seem to be on track to finding some common ground.

Henrik Dibbern, chairman of the GPs’ union, PLO, told Politiken newspaper this weekend that they could accept large parts of the law as long as the government clarifies that GPs will keep the right to negotiate their role, are able to maintain doctor-patient confidentiality and that GPs who refuse to collect data will not be punished.

“[Krag] does not in principle need to alter the law,” Dibbern told Politiken. “If we can see from her remarks that she has listened and will let us keep our right to negotiate and that the data won’t be abused, we can live with that.”

Pharmaceutical lobby group Lægemiddelforeningen did not return our request for comment before the time of publication, but we expect to follow up with a perspective of drug makers in the coming days.