Now that most of the restrictions due to Covid-19 have had their day, it’s time to consider whether we really need to bring everything back to the way it used to be. For Patient Federation Netherlands, not everything has to go back to how it was two years ago.
The corona time has forced to lead to innovations in healthcare that we believe should remain. First of all, the increasing use of digital resources in healthcare. Patients no longer have to go to the doctor for every appointment or check-up, but can handle part of the daily routine themselves at home. By measuring their values and transmitting them digitally, by calling the doctor instead of traveling to the doctor’s office. Let’s not throw out the benefits for doctor and patient with the bathwater: the doctor has time left for patients that he or she really needs to see physically, the patient can better manage his own time and maintain contact from home or workplace if necessary .
Patient records
That is the immediately visible gain, in time and in care for doctor and patient. There is, however, a second point that we believe should be carefully considered. The emergency law regarding covid-19 includes a temporary provision regarding the availability of patient files for care providers. As long as corona reigned, it has been agreed that records of patients who are being admitted will be accessible to healthcare providers, regardless of whether the patient has previously given permission for this. In the jargon this is the ‘opt-out construction’. We assume that the patient is happy with his or her medical data being available to healthcare providers, unless he or she expressly states that he or she does not want this.
This prevents a lot of research if a patient has to be admitted quickly. After all, the medical history is known, so immediate action can be taken. Of course, in this situation the files are not on the street, but are only visible to direct care providers.
Temporary situation
This situation is temporary, because until now the rule in the Netherlands has been that a file is only accessible to healthcare providers if the patient has previously given permission for this. This is called an ‘opt-in construction’: your file with medical data is not visible and will only open when you want it to.
In day-to-day practice this usually works well, although it is increasingly apparent in emergency care that a closed file causes problems and sometimes leads to life-threatening situations because care providers do not know anything about the medical history of the patient entrusted to their care.
Research by the Patient Federation shows that people find it important that their medical data is available in an emergency. 92 percent want their medical information to be exchanged by healthcare providers they deal with. 58 percent even think this is very important. At the same time, many people think that this is already the case, while that is not true.
Yes unless
We therefore think it is time to take a closer look at existing practice. Do all the people who have not yet given permission for data exchange really know what they have not signed up for? Do they really want nothing about their medical history to be known in an emergency? Or do they simply assume that it is good as long as the government does not indicate that it can be done differently?
It is time for the government to start a discussion about whether opt-in should no longer be the rule, but opt-out. Your medical data will be exchanged, unless you expressly do not want this. To achieve this, the government must take more control. We advocate that the recording and exchange of medical data should be standardised. A fundamental discussion is needed about consent as a basis. A question for permission that has not (yet) been answered or has not been asked is now interpreted as ‘no’. Why not as ‘no objection’, we wonder.
The Medication Transfer program shows that good data exchange helps. It contributes to safe medication use, quality of care and transparency, prevents unnecessary medication errors and thus 27,000 hospital admissions per year, which saves substantial healthcare costs.
Government: take the lead
For that reason alone, the government must take the lead, because we still see too often that the choice of the government is leading for people who do not or only little in the matter. A government that says that those who do not choose, in fact choose exchange, paves the way for many doubters and the consciously ignorant.
At the moment, the government still opts for non-exchange unless the patient decides otherwise. But are the people who follow this line aware of the risks involved in not exchanging?
Now about 8 million people have given permission to share their data. That seems like a lot, but almost half of the country has not done so. Do these people know that? Are they aware of the negative consequences if things go wrong? It sounds patronizing, but shouldn’t the government, should society, protect these people from themselves? We think so.
Dianda Veldman is director-administrator of the Dutch Patient Federation.