Parliamentary letter reviewing bases for data exchange in healthcare

The policy paper that accompanies this letter can be found here.

Dear Chairman,

Good and reliable data exchange contributes to quality of care, continuity of care and quality of life. Clients have an interest in ensuring that healthcare professionals have adequate, up-to-date and uniform information in a timely manner, so that good care can be provided in the right place at the right time. At the same time, clients' information must be handled with extreme care. This is to continue to guarantee free access to care and to protect privacy.

As our care changes, the importance of good data exchange increases. For example, care is increasingly taking place in chains and networks. This means that more and more healthcare organizations are taking on a part of the care. As a result, clients have to deal with several care providers during their treatment. Reliable and fast exchange of current care data is therefore becoming increasingly important. That currently the right data in healthcare are not always available in the right place at the right time has negative effects on healthcare delivery. For clients, not getting data through properly sometimes results in unnecessary examinations and increases the risks of avoidable errors. Caregivers lose time with administrative actions such as finding out missing data. This is time at the expense of providing care to the client. Moreover, incomplete data transfer can result in caregivers having to (re)perform unnecessary, sometimes costly, examinations. This unnecessarily increases healthcare costs and inhibits innovation in healthcare. All this also has negative consequences for society as a whole.

Given the great importance of good, but also careful data exchange in healthcare, there is a call from the field - through the Healthcare Information Council (IB), among others - and from your Chamber for government direction. The government itself also wants to take steps to optimize data exchange in healthcare. The coalition agreement 2021-2025 "Omzien naar elkaar, vooruitkijken naar de toekomst" states: "Data and data exchange between patient/client and provider and providers among themselves, in accordance with privacy legislation, will be improved whereby uniformity is necessary."(1)

The reassessment of the bases for data exchange is part of my efforts to optimize the healthcare information landscape together with the field.(2) I think it is important that the rules about when, what data can be exchanged with whom are clear to healthcare professionals. That benefits good care and prevents embarrassment among healthcare professionals. The reassessment will take into account the state of the art, so that the principles are permanently suited to modern times, while respecting privacy. In early 2023, I want to share with you a broadly supported policy line on how the conditions for data exchange in healthcare can optimally contribute - now and in the future - to the flow of data between healthcare professionals.

An analysis of the bottlenecks caused specifically by the bases for data exchange in healthcare was promised in the parliamentary letter of October 15, 2021.(3) In addition, the Van de Berg/Van der Staaij motion(4) called on the government to "map out which legislation the Netherlands differs from other countries by applying a different interpretation of the AVG, to take stock of which national laws stand in the way of data exchange and how they could be modernized, and to inform the Chamber of this before April 2022. In addition, the Senate recently invited me by letter for an oral consultation on whether the bases for data exchange in healthcare should not be reviewed and require recalibration independent of technology.(5) This consultation is scheduled for June 7.

Over the past period, work has been done to obtain an initial picture of the bottlenecks caused specifically by the healthcare data exchange bases. This initial picture shows that the bottlenecks are diverse. This is not surprising: healthcare is large, disparate and complex, and data exchanges in healthcare are therefore multifaceted and significant in number. Given the proven complexity and the steps that still need to be taken, it has not proven feasible to present a comprehensive policy as early as April 2022. This year a more in-depth examination of the bottlenecks will be made in close cooperation with the stakeholders. In addition to the initial findings or state of affairs regarding the recalibration process, with this letter I also inform you about how I will approach this more in-depth analysis.

Furthermore, in this letter I am addressing and fulfilling commitments made during the October 2020 General Consultation. Committed to address in a separate letter on consents:

• the impossibility of specified consent (p. 9);

• The applicability of the Estonian mode of consent (opt-out) (p. 10-11);

• the online consent facility Mitz (pp. 9-10);

• the Fact Sheet consent (p. 3);

• The consent issue surrounding acute care (pp. 8-9). 

1. Recalibrating bases of data exchange in health care

1.1 Legal framework bases

For an understanding about and assessment of issues surrounding foundations, the current legal framework is outlined here first.

The General Data Protection Regulation (AVG), the General Data Protection Regulation Implementation Act (UAVG), the Medical Treatment Agreement Act (WGBO)(6), the Individual Health Care Professions Act (BIG) and the Supplementary Provisions for Processing Personal Data in Healthcare Act (Wabvpz)(7) stipulate how health data must be handled. The basic principle is that health data should be handled carefully with a view to protecting the privacy of clients and with a view to free access to care for everyone. That is, anyone can freely seek medical help, confident that medical information remains within the consulting room.

The provision, provision and consultation of healthcare data requires a basis for processing personal data (Article 6 AVG) and a ground for exception for processing special personal data (Article 9 AVG). In addition, the provision of healthcare data outside the treatment relationship also requires a ground for breaking medical confidentiality (WGBO and Wet BIG).

When care information is exchanged through an electronic exchange system(8) (hereinafter EUS), the explicit consent of the client is required under Article 15a of the Wabvpz to make care information available through that EUS. This concerns the situation where data

be made viewable for future situations so that other healthcare providers who have (or will have) a treatment relationship with the client can view the data, without the healthcare provider who made the data available having to take any active action to do so.(9)

The explicit consent to make available through an EUS also implies the consent to make available and provide (special) personal data, as referred to in the AVG, provided that the consent meets the requirements of the AVG. The same applies to breach of medical confidentiality. This is of course only relevant insofar as consent is required under the AVG or for breaking medical confidentiality.

For the sake of clarity, I note that the Electronic Data Exchange in Healthcare Act (hereinafter Wegiz) does not change the existing bases for data exchange. The Wegiz assumes, and fits within, the existing legal framework that deals with data protection.

Application of this legal framework in practice is complex. To clarify the legal framework, my predecessor has already issued a Fact Sheet Consents for Healthcare Professionals, which explains the different consent regimes.(10)

Below I illustrate application of the legal framework through some practical examples.(11)

Situation 1. A patient goes to the family doctor because of a spot on her skin. The GP refers her to a dermatologist at an independent treatment center. With the referral, the family doctor sends all the necessary data from the patient's medical record.

In this situation, it can be argued that the disclosure does not require consent under the AVG, because it is compatible with the treatment agreement and because the processing is necessary for the proper treatment or care of the data subject.(12) However, the patient must give consent to break medical confidentiality.(13) However, such consent is assumed in practice because of consent to the referral itself. Consultation and use of the data by the dermatologist is permitted because the processing is necessary for the performance of the treatment agreement and for the proper treatment of the data subject.(14)

Situation 2. The patient is with the dermatologist. The dermatologist hesitates and seeks advice from a fellow dermatologist in the same clinic. Prior to the consultation, the dermatologist digitally sends the colleague a photograph directly, that is, without using an electronic exchange system.

No consent is needed under the AVG for the provision in this situation, because the processing is necessary for the performance of the agreement with the client and because the processing is necessary for the management of the relevant (healthcare) institution.(15) Consent is also not needed for the breach of medical confidentiality, because peer counseling involves direct involvement in the performance of the treatment agreement.(16)

Consultation by the fellow dermatologist is permitted because the processing is necessary for the performance of the treatment agreement and for the management of the institution or professional practice.(17)

Situation 3. Three years later, the patient's site turns out to be non-fluffy after all. The attending oncologist, whom the patient himself went to, from another hospital now wants to see this photo.

a. The dermatologist provides the photograph to the oncologist from the other hospital without using an EUS

In this situation, in most cases, explicit consent of the patient is required for the provision of the (special) personal data(18) under the AVG.(19) Also, in this situation, consent for the breach of medical confidentiality is required for the provision.

Consultation by the oncologist is permitted regardless of how the data were made available. This is because the processing is necessary for the performance of treatment agreement and for the proper treatment of the data subject.(20)

b. The dermatologist made the photo available through an EUS

To make the photograph available via an EUS, the dermatologist needs prior express consent from the patient under the Wabvpz. Such consent also includes the consent required in most cases for making the data available and providing the data under the AVG, provided the consent meets the requirements of the AVG, as well as for breach of medical confidentiality.

Through the EUS, the oncologist from the other hospital can consult the photograph. Consultation is permitted regardless of how the data has been made available, as the processing is necessary for performance of the treatment agreement.

Situation 4. After the treatment process, the patient will need to receive care and supervision from various healthcare providers (network care). Such as from a rehabilitation physician, physical therapist or a dietician. Because the oncologist does not know which healthcare providers will be involved, it is desirable that the data be made available through an EUS. Thus, in principle, the data can be accessed by the other healthcare providers at the desired time.

To make the data available via an EUS, the healthcare provider (who wants to make the data viewable) needs the client's prior explicit consent. This consent also includes the consent that is required in most cases for making the data available and providing the data on the basis of the AVG, provided that the consent meets the requirements set by the AVG, and for breaching medical confidentiality.

Consultation by different health care providers is permitted because the processing is necessary for the performance of the treatment agreement concluded with that health care provider and for the proper treatment of the data subject.(21)

1.2 Findings to date: an initial picture

As indicated in the introduction, work has been done during the past period to obtain an initial picture of the issues. This first picture shows that the bottlenecks are diverse. Therefore, a further analysis will be carried out next year. In anticipation of that further analysis, I am first informing your Chamber of the initial findings.

The bottlenecks are caused in the first place by the high degree of unfamiliarity among care professionals and patients when it comes to what possibilities the current legislation offers. Care professionals are hesitant to act and care professionals experience the rules as conflicting.(22) This is related to the complexity of current legislation. In addition, the Patient Federation of the Netherlands concluded in the Report on the Exchange of Medical Information of September 2021 - containing the results of a study into the experience of data exchange in health care among elderly patients with a condition in particular - that it is not always clear to these patients when their medical information can or cannot be exchanged between health care providers and whether their consent is required.(23)

Second, based on the initial analysis, the picture is that the bottlenecks are caused by the fact that the current foundations are not always (no longer) in line with current developments and policy wishes in the field of data exchange. For example, there is an increasing need among healthcare providers for immediate and 24/7 access to a complete and up-to-date set of relevant patient data, such as the patient summary and medication data. This can be done through the use of an EUS. The client must have given permission to all healthcare providers involved to create a complete and current set of patient data via an EUS. In the absence of such consent, healthcare providers do not have immediate access to an up-to-date medication overview 24/7.(24)

Third, it is important to note that few Dutch people have indicated whether or not they consent to data being made available via an EUS. Moreover, given consents are not unambiguously recorded and thus difficult for health care providers to find.(25)

1.3 Approach to project reassessment of data exchange bases

In order to make the reassessment of the bases for data exchange in healthcare project feasible and solution-oriented, I am taking a focused, step-by-step approach. In the coming year, the focus will be on further analyzing a number of specific data exchanges. These are:

• the four exchanges intended to be designated first among the Wegiz;

• the exchanges as part of the creation of the basic medication data set; and

• exchanges in the context of network care and chain care.

The choice of data exchanges is based on the fact that these data exchanges are considered of such importance for good care that the removal of any bottlenecks in the foundations for these data exchanges is given priority. The choice regarding data exchanges is discussed in more detail in Section 4.

In addition, I am committed to developing a bill for data sharing in acute care. I will also discuss that data sharing in more detail in Section 5.

The analyses of data exchanges described in Section 4 are done using the "integrated assessment framework" (IAK). The relevant stakeholders are also closely involved in the analyses. I will use the analyses to arrive at a policy line as integral as possible in the area of the bases for data exchange in healthcare. I intend to inform you of this in early 2023. This policy line will in any case see to the above analyses. I will also address in the policy line:

• finding the balance between the importance of good data sharing and the importance of handling (special) personal data carefully and protecting clients' privacy;

• How the AVG has been implemented in other countries, and if different from the Netherlands, why this is so (as it may be due to the way care is regulated) and European developments;

• the various (short- and long-term) solution directions. The solutions may be communicative, technical, legal, or a combination thereof, for example. In examining the solution directions, the state of the art, sustainability, and the protection of clients' privacy are taken into account;

• The approach to implement the solutions as soon as possible.

In order to identify short-term solutions that fit within the existing legal framework, this year we are working with stakeholders to identify what communicative, technological and functional actions would best help healthcare providers and patients. I will also inform you of this in the letter on my policy line in early 2023.

1.4 Data exchanges for the recalibration of data exchange bases

It was indicated above that a number of analyses are being prepared for the purpose of recalibrating data exchange bases. First, I have chosen to analyze data exchanges that are priority candidates for designation under the Wegiz this year. These are the data exchanges "Basic Care Data Set," "Digital Prescribing and Provisioning," "Image Availability," and "Nurse Transfer." After all, these data exchanges have already been identified together with the field as important for being able to provide good care.

Furthermore, an analysis is being drawn up on the creation of the basic set of medication data in the context of Medication Transfer.(26) The creation of this analysis has priority, because various studies have already shown that incidents involving medication occur on a daily basis in the Netherlands.(27) The importance of an up-to-date and complete medication overview is thus endorsed.

In addition, analysis will also be conducted for network care and chain care.

The trend towards network care and chain care means that more and more care professionals are involved in the care of a single patient. Care is then provided within a care network - being collaborations of independent care providers around patients. This development deserves special attention within this recalibration process, because it is precisely this development that has largely led to discussions about the basis for data exchange.(28) In order to be able to determine the bottlenecks properly, it is important to clearly define what network and chain care entails. For example, it will have to be determined whether this also includes help and support in the social domain. Next year I will work on this with the stakeholders involved.

1.5 Data exchanges in acute care

Another data exchange for which recalibration of conditions is desirable is data exchange in the case of acute care. Even before the pandemic, there was a need for better availability of medical data in acute care. In the pandemic, the problem became even more urgent.

The recalibration of conditions for data exchange in the case of acute care is already underway. My predecessor informed you about the status of this trajectory in a letter dated December 20, 2021.(29) Preparations for a bill are currently underway. The trajectory on acute care thus anticipates the broader project to reassess data exchange conditions. Part of the reason for this is the imminent expiration of the current tolerated structure for data sharing in the emergency care chain - the "Corona Opt-in. Anticipation is possible because the bottlenecks involved in data sharing in acute care are already more concrete.(30)

In the case of acute care, it is desirable that the GP's patient summary be immediately (24/7) consultable. This can be achieved by using an EUS, which requires prior explicit consent. If the data are not made available in an EUS, the information must be requested from the GP. This takes a lot of - in acute care situations costly - time. An additional factor is that the GP cannot always be reached (quickly), especially outside office hours. Where the general practitioner can be reached, it may be unclear whether the general practitioner may pass on the data if the patient is unable to consent to the breach of medical confidentiality (e.g. if the patient is unconscious).

Currently, for only a small proportion of the population, the relevant information is available via an EUS in the case of acute care. For a long time, GPs only asked clients' permission to make the relevant data available via an EUS for the purpose of observation, which in practice means availability for HAP. About 50% of the Dutch have had consent or refusal recorded for this purpose. In 2021, in volgjezorg.nl (31) - a facility in which patients can arrange their online consent for making healthcare data available via the National Switch Point - the consent question has been changed to consent for later unknown use. This consent, unlike consent for observation, also covers exchange with the ED and ambulance. Only a small part of the Dutch population has recorded consent or refusal for this: about one million.

GPs have indicated that they do not expect the number of consents to increase if they request them (further). They also indicated that requesting and registering consents is a considerable administrative burden, at the expense of time and attention for the patient in the consulting room. Moreover, asking millions of Dutch citizens for permission for all kinds of specific data exchanges is expected to be a lengthy process, which means that for a long time not everyone can be offered the desired good acute care. It is therefore desirable that the conditions imposed on data exchange in acute care be recalibrated.

2. Specified consent

The Wabvpz contains an article on specified consent. This means that clients themselves can determine which data can be accessed by whom and for what purpose via an EUS. The purpose of specified consent was to give citizens maximum control over who can view which data and when in the context of care and treatment.

A workable interpretation of specified consent has been sought. This does not appear to be possible. In the letter of October 4, 2019, my predecessor informed your Chamber about the complexity of specified consent.(32) In that letter, it was indicated that research was conducted into a practical implementation of specified consent. Research showed that in order to accommodate all consent variations, 160 consent options would be needed in practice, and an alternative scenario with 28 consent options was developed. The Regulatory Burden Assessment Board (ATR) subsequently concluded that specified consent cannot be provided with a workable interpretation.(33) Giving or not giving consent (yes/no) or checking 28 check boxes is not sufficiently specified and if it is sufficiently specified (160 check boxes), it is not workable for the citizen. Therefore, it was decided not to implement the requirement from the Wabvpz stating that client consent for the provision of data by the healthcare provider in an EUS is specified consent.

3. Online consent facilities

Clients and health care providers lack a (central) place where they can securely and reliably register, access and manage their consent online for data exchanges throughout health care. Therefore, I am committed to online consent facilities (OTVs) in which consents given by clients are registered and in which the client has an overview of the consents given. OTVs serve as a technological tool for the client and the healthcare provider who wants to make data available in cases where the client's consent is required. An OTV can reduce the handling embarrassment of healthcare providers. With OTVs, the client is in control by having full management (registration, revocation and access) over their given consents.

The Association of Healthcare Communication Providers (VZVZ) has taken the initiative to develop a nationally available OTV called Mitz. The first phase of the rollout is expected to start next summer. This is currently the first and only OTV. There are also some other decentralized initiatives that support the function of Consent. These initiatives do not allow the client to manage his/her consents online.

In line with strengthening more public control of electronic data exchange in healthcare, and called for to this end by the Van den Berg/Kerstens (34) motions, among others, I will steer more firmly towards a nationwide network of infrastructures, generic functions and related ICT facilities. Encouraging OTVs is part of this. To this end, I have set several things in motion:

• I have begun preparations to create a legal basis for the use of the Citizen Service Number (BSN) by OTVs. In healthcare, this is the identification number used to identify a client. A consent given in an OTV must be unambiguously linked to the client. The BSN also allows the client to use his/her DigiD to securely log on to the OTV. Under the UAVG, the BSN may in principle only be processed if regulated by law. For OTVs, this legal basis is lacking.

• In consultation with the Ministry of the Interior and Kingdom Relations (BZK), Mitz was granted a temporary connection to DigiD, under strict conditions and in anticipation of the legal regulation.

• In order to eliminate the last bottlenecks and to keep up the pace to be able to pass workable solutions for all parties involved, I have organized a number of so-called 'pressure cookers' in the past period, together with VZVZ and the various healthcare parties/domains and ICT suppliers. I am hopeful that this will enable us to start the implementation phase in the near future. VZVZ aims to start implementing Mitz in two healthcare regions in the first half of 2022.

• Finally, the Raemakers(

  ) to explore whether a campaign could help increase the number of consents. I am considering such a public campaign as part of the launch of Mitz as an OTV.

4. The Estonian model

Your Chamber last year asked my predecessor to elaborate on the opt-out system of consent as it exists in Estonia. (36) Estonia is at the forefront of digitalization and privacy legislation. But, Estonia differs from the Netherlands in several respects in terms of its healthcare system, for example in terms of (public-private) design, implementation and supervision. Estonia also has an extensive national ICT infrastructure with national facilities that find their foundations in Estonian laws. In which situations of data exchange in healthcare the Estonian opt-out possibility applies also has a specific basis in Estonian law.

I find the Estonian situation interesting and can offer inspiration in parts, but it is certainly not applicable one-to-one to the Netherlands. Next year, as part of the analyses for the policy line, we will look at how other countries have applied the AVG and whether and if so, how they can be made suitable for application in the Netherlands. I will involve the Estonian model in this.

5. Conclusion

Recalibrating the bases is an important part of optimizing data exchange in healthcare for the benefit of the quality and timeliness of patient care. In the elaboration, the importance of data protection will have to be kept in mind and - together with the healthcare field - the right balance between quality of care and data protection will always have to be sought. It is therefore important to follow a careful process.

At the same time, it is important that steps are already being taken to optimize data exchange in healthcare. In the coming year, I will therefore also expressly examine where it is possible to solve technological, functional and communication bottlenecks within the legal system. I will closely involve the stakeholders in this. Where possible, I will also start with the implementation of solution directions that can be realized in the short term, for example to reduce the inability to act and to deploy OTVs such as Mitz. Optimizing data exchanges in acute care also anticipates the broader recalibration.

Together with the other processes underway to optimize data exchange in healthcare, such as the Wegiz and the consideration framework for generic functions, I am convinced that together with the field great strides will be made in the coming period.

I sent a similar letter to the President of the Senate of the States General.

Sincerely,

the minister of health,

Welfare and Sports,

Ernst Kuipers

Footnotes

1. Coalition Agreement 2021-2015, pg. 34.

2. Parliamentary Papers II 2021-2022, 27529, no. 268.

3. Parliamentary Papers II 2021-2022, 27592, no. 268.

4. Parliamentary Papers II 2021-2022, 335925 XVI, no. 53.

5. Parliamentary Papers I 2021-2022 27 529 and 35 824, no. R1.

6. Book 7, title 7, section 5, of the Civil Code

7. Other laws and regulations may also be relevant, depending on the type of data and care domain.

8. Being a system by which health care providers may electronically, make records, portions of records, or information from records accessible to other health care providers, not including a system within a health care provider, for maintaining an electronic record.

9. Parliamentary Papers II 2013/14, 33509, nos. 7 and 32

10. Consent Fact Sheet, consent for sharing medical data between healthcare providers, Ministry of Health, June 2021.

11. The examples are a simplified representation; in practice, it will always be necessary to assess whether and how the framework is applicable in the specific circumstances of the case.

12. Article 6(1) and (4) AVG and Article 9(2)(h) AVG in conjunction with Article 30(3)(a) UAVG.

13. Article 7:457, first paragraph, WGBO.

14. Article 6(1)(b) AVG and Article 9(2)(h) AVG in conjunction with Article 30(3)(a) UAVG.

15. Article 6(1)(b) AVG and Article 9(2)(h) AVG in conjunction with Article 30(3)(a) UAVG. Peer review is of a form of quality management within the healthcare institution and therefore falls under the concept of "management of the institution," according also to the explanatory memorandum to the AVG Implementation Act (Parliamentary Papers II 2017-18, 34 851, no. 3, p. 112).

16. Article 7:457, second paragraph, WGBO.

17. Article 6(1)(b) AVG and Article 9(2)(h) AVG in conjunction with Article 30(3)(a) UAVG.

18. Article 6(1)(a) AVG and Article 9(2)(a) AVG.

19. Unlike referral, in a this situation, there is less likely to be "compatibility with the treatment agreement" or "good care under the treatment agreement.

20. Article 6(1)(b) AVG and Article 9(2)(h) AVG in conjunction with Article 30(3)(a) UAVG.

21. Article 6(1)(b) AVG and Article 9(2)(h) AVG in conjunction with Article 30(3)(a) UAVG.

22. Letter_input_Wegiz_Federation_Medical_Specialists.pdf (demedischspecialist.nl).

23. https://www.patientenfederatie.nl/dit-doen-wij/onderzoeken/onderzoek-naar-uitwisseling-medische-gegevens.

24. Position paper, Knelpunten en behoeften bij de uitwisseling van medische gegevens, Patiëntenfederatie Nederland, October 2021; Memo on consent to transfer base set medication transfer (legal framework).

25. Ditto.

26. The analysis on "Digital prescribing and dispensing" will be part of this analysis. Under Medication Transfer, in addition to "Digital prescribing and dispensing," the data exchanges include "medication and administration data," "laboratory data for medication," and "contraindications and hypersensitivities."

27. The Institute for Responsible Medication Use (IVM) voluntary reporting system for medication incidents receives about 14,000 reports annually, from a limited group of hospitals and pharmacists. Because of the limited coverage of the reporting system, IVM estimates the total number of medication incidents in the Netherlands to be a multiple of this. See: Ecorys, MKBA Medication Transfer, June 14, 2021, p. 23. The 2017 Medication Safety Follow-up Study found that more than 65,000 people were hospitalized in the Netherlands in 2013 as a result of medication incidents. See: Final Report: Medication Safety Follow-up Study, Nivel, January 2017. Over 27,000 of these admissions (42%) were assessed as potentially avoidable in that study.

28. See, among others, InEen's May 24, 2018 letter to the Permanent Parliamentary Committee on Health, Welfare and Sport pointing out the importance of better collaboration in primary care, especially around frail elderly and chronic patients. InEen writes that much of the legislation still assumes an assumed one-to-one relationship: a patient has only one care provider. InEen also states that the complicated balance between rules and workability in healthcare practice is increasingly frustrated by divergent requirements from different domains of specific and generic laws and regulations. The organization of care and associated data exchange in care networks, especially around frail elderly and chronic patients, is hampered by laws and regulations, which InEen says poses risks to patient safety and quality of care.

29. Parliamentary Papers II 2021-2022, 35925, no. 164.

30. For example, the existing Data Sharing Directive GP - GP Post - Ambulance Service - Emergency Department (also known as the Acute Care Data Sharing Directive 2014) states that to provide acute care, a number of parties require the GP's Professional Summary (PS). The PS is a minimum set of medical data from the general practitioner's record for observation, also known as GP Observation Data (Hwg). Pages 17 and 18 of the Guideline provide a description of the PS.

31. On Volgjezorg, patients can arrange consent and follow what happens to their medical data. Volgjezorg makes visible to a patient which data has been shared via the Landelijk Schakelpunt with the patient's permission

32. Parliamentary Papers II 2019-2020, 27 529, no. 192.

33. Ditto.

34. Parliamentary Papers II 2020-2021 27 529, no. 222 and no. 223.

35. Parliamentary Papers II 2020-2021, 27 529, no. 224.

36. Parliamentary Papers II 2020-2021, 27 529, no. 262.