Radar: Corona recovery care only reimbursed after compulsory participation in study

"Some 25,000 ex-COVID-19 patients still have severe impairments after their infection, such as extreme fatigue, difficulty concentrating, lung problems or loss of muscle mass. These symptoms can be reduced by paramedical recovery care. Those who want to be reimbursed for this recovery care are obliged to cooperate with a survey. Those who refuse must pay for the help out of their own pocket. In addition, ex-COVID-19 patients must start their treatment within four months, otherwise they are also not entitled to reimbursed recovery care.

People who remain ill for long periods after COVID infection often need paramedical recovery care (for example: physiotherapy, exercise or occupational therapy, as well as dietetics). (...) To reimburse these costs from the basic insurance, scientific evidence must underpin a treatment. That is why the Netherlands Healthcare Institute, which advises the government on which care should be reimbursed in the basic insurance, has created the temporary scheme paramedical recovery care after COVID-19. (...) This recovery care will be reimbursed from basic insurance from 18 July 2020 to 1 August 2021, provided people are obliged to cooperate in an examination. It says on the site of Zorginstituut Nederland: 'A condition for paramedical recovery care to be reimbursed is that patients must be willing to cooperate in research. Permission must be given to share anonymised treatment data from this recovery care with the researchers. Without this consent, the care will not be reimbursed. The study will examine the effects and costs of paramedical recovery care for COVID-19."

Read here the full article at AVROTROS Radar and watch the television report dated 8 March 2021, including an interview with Privacy First.

Compulsory cooperation in an investigation

Compulsory participation in a study and sharing your data in exchange for reimbursement of care is a thorn in Ergotherapie Nederland's side (as well as other healthcare providers and patients). 'We do not consider it ethically responsible for clients to be denied necessary care purely because they do not want to participate in the research.' It is also not right, in the professional association's view, because occupational therapy is already simply basic insured care. 'Naturally, we think it is important that as many clients as possible participate in the study but there should be no question of coercion; and this is in fact the case now,' the occupational therapists wrote last week in a letter to the Lower House's VWS standing committee. (...)

No freedom of choice

Occupational therapist Dominique van der Veen started a petition among healthcare providers. Within three days, there were already more than 500 signatures. Franka Fels has worked as an occupational therapist for 27 years and her practice treats about 50 ex-COVID patients. She says: "The people to whom we make it known that it is about an investigation, they all agitate against it because of the freedom of choice that is not there. In the end, they are willing to then join the study anyway, because they are desperate. And they don't oversee it, they want help, they can't manage. So they have no choice.'

Research via app on your smartphone

The COVID paramedic survey is conducted anonymously by Radboudumc. Participants must give permission for their data to be extracted from their digital health records. Furthermore, ex-COVID patients must complete a questionnaire of up to 74 questions on their smartphones via the app YourResearch in months three, six, nine and 12. A questionnaire must also be completed again once therapy has stopped. Not all COVID patients have smartphones. Also, not everyone is digitally proficient enough and some suffer from such severe fatigue and concentration problems that completing a laundry list of questions may be too much to ask.

Medical secret

54-year-old ex-covid patient Annick Smit opposes this compulsory linkage: 'Surely I refuse to be obliged to cooperate in a medical examination! That is a gross violation of my privacy and medical confidentiality.' Moreover, she is also out of the loop because of that four-month requirement because she got corona in the first wave. She collapsed through her legs on 1 February 2020 in the queue for the checkout. At that time, COVID-19 had not yet been officially diagnosed in the Netherlands. The ambulance that rushed in diagnosed 'a bout of flu' and she was told to go home and get well. Annick spent a month in bed deathly ill. Only months later - when there was a test - was corona diagnosed. (...) A year after her infection, she still has all kinds of symptoms such as terrible fatigue, no taste and a huge lack of concentration. 'I have to write everything down otherwise things go wrong,' she says. Annick should actually receive physiotherapy and cognitive therapy, but there are more than four months between the end of the acute infection stage and her possible referral by the GP. And then you don't qualify for reimbursement. Paying for the convalescent care herself is not an option, as she lives on welfare and has no supplementary health insurance.

Free consent

Vincent Böhre is director at Privacy First, an independent foundation whose aim is to preserve and promote the right to privacy. Böhre says such mandatory participation in research is unacceptable. 'I think it is wrong. Privacy is a fundamental fundamental right and certainly when it comes to medical matters. Then there are strict rules that must be met in order to use that data. That can only be done with strict, explicit free consent in advance. And in this case, there is no free consent, because there is dependency. Of a kind of compulsion, that people can only get their care reimbursed if they participate in medical research.'

'Pay right to privacy'

He continued: 'Apart from the right to privacy and right to good care, there may be a legal basis, but ethically it is wrong. You cannot enforce this as a government. This creates a dichotomy: people who cooperate and those who don't. Those with enough money pay for the care themselves and are entitled to their privacy. Those without money have to pay for care with their data.' (...) Privacy First does not understand this obligation. Patient Federation Netherlands surveyed in November 2019 how people stand on sharing health data for research. Böhre says: 'If you kindly ask people, "Would you like to cooperate in a medical study?", 80 per cent will agree without any problem. With such large numbers of patients, you then still have enough data for a thorough study. Then obligation is not necessary.' (...)

Whether the temporary scheme for paramedical recovery care after COVID-19 will continue beyond 1 August 2021, the Ministry of Health could not yet say. "That is up to a next cabinet after the elections, but it is in line with expectations", said Minister Van Ark's spokesperson.