Three psychiatrists and five GGZ patients are taking the Dutch Healthcare Authority (NZa) to court. Since last summer, practitioners have had to share data about their patients with the NZa. The plaintiffs feel that this violates medical confidentiality and the privacy of their patients. Through the court they want to put an end to this.
So writes NRC (1), which spoke with psychiatrist Cobie Groenendijk and Jolien Tuijl.
In 2022, the NZa announced new regulations for psychologists and psychiatrists. They will be required to share data on their patients with the healthcare authority. The regulator wants to compare this data to get a better picture of different treatments and patients and to predict which treatments will take more time than others. The idea is to reduce waiting lists in mental health care.
Experts warn that the health authority wants to collect "highly invasive and privacy-sensitive questionnaires" about the mental and social problems of an estimated 800,000 patients. Clinicians who refuse to share this data risk a fine.
There was much opposition to the new legislation. First of all, the privacy (2) of clients was at stake: after all, they did not give permission to their practitioner to share personal and medical data with the NZa. In addition, people felt that the mandatory sharing of patient data violated medical confidentiality.
"People don't know that their psychiatrist or psychologist now has to register what their sexual problems are, how bad their addiction is or what disorder they suffer from, and that all that data eventually ends up with the NZa," Groenendijk told daily newspaper Trouw in an interview.
The House of Representatives was also critical (3) of the sharing of patient data with the NZa. Several parties inquired from the cabinet about the legal basis for sharing "highly sensitive personal information" and the possibility of a fine being imposed by the regulator. The groups were also concerned that the legislation would affect the relationship of trust between practitioners and patients.
Ministers Conny Helder (Langdurige Zorg en Sport) and Ernst Kuipers (Volksgezondheid, Welzijn en Sport) promised that the data the NZa receives cannot be traced back to individual persons. According to the ministers, the healthcare authority needs patient data in order to get a better picture of "care severity and treatment utilization" in order to make care appropriate for patients.
Psychiatrist Cobie Groenendijk and Jolien Tuijl are outspoken opponents of the new legislation. That is why they are starting a lawsuit against the NZa. Today a campaign was launched to raise money for legal assistance. Dozens of psychiatrists and psychologists support the action. At the time of writing, 3,750 euros have been donated. The aim is to collect 60,000 euros.
"We consider the mandatory delivery of this intimate information an unacceptable violation of medical professional secrecy and client privacy, and thus an attack on the quality and accessibility of mental health care. If it cannot be guaranteed that what is discussed in the consultation room stays there, clients' freedom to speak openly about their problems disappears. Building trust is a prerequisite for a treatment relationship in which the causes and solution of mental problems can be sought," they write on the crowdfunding site Trust in the Mental Health Care (4).
Finally, Groenendijk and Tuijl lack a scientific basis for the NZa's questionnaires. "The measurement method on which the questionnaires are based is unsuitable for comparing the performance of practitioners. They thus draw the wrong conclusions about which care or care provider is more efficient, or achieves better results."
The initiators of the crowdfunding campaign support the NZa's goal of shortening waiting lists in the mental health sector. However, they fear that the mandatory sharing of patient data will do mental health care more harm than good.
"People with mental problems will be less inclined to speak freely about what is bothering them when they know that this information will be stored in a government database. The barrier that already exists when turning to the government for help with mental problems will also be raised by this measure, with the extreme result that people with mental problems will increasingly avoid mental health care."
The Autoriteit Persoonsgegevens 5) intervened in the matter late last year. The privacy watchdog said the NZa is legally authorized to collect health information from patients to develop a system capable of calculating healthcare costs more accurately.
The regulator did impose some strict conditions on the plan. First, with the NZa requesting data from GGZ patients over a period of one year. Should the healthcare authority need data again at a later date for the development of the system to calculate healthcare costs, it must come up with a new legal regulation and substantiation of the need. To ensure patient privacy, the Autoriteit Persoonsgegevens wants to see the new regulation in advance.
Finally, the NZa may only use the requested data for the development of the new system. The healthcare authority must lay this down in black and white in a new version of the regulation.
https://www.nrc.nl/nieuws/2023/02/12/zorgautortiteit-wil-persoongegevens-om-te-weten-hoe-duur-een-patient-is-campagne-van-bezwaren-2-a4156894
https://www.vpngids.nl/privacy/
https://www.vpngids.nl/nieuws/tweede-kamer-veroordeelt-nza-voor-ongevraagd-verzamelen-patientgegevens/
https://vertrouwenindeggz.nl/
https://www.vpngids.nl/nieuws/ap-akkoord-met-verzamelen-gegevens-ggz-patienten-door-nza/
