| Follow the rule of law |
To enhance compliance with the laws (General Data Protection Regulation and Dutch Medical Treatment Contracts Act), the privacy committee will be responsible for:
In addition, the following measures are taken to enhance compliance with the relevant laws:
Data from electronic health records are pseudonymized before being sent and stored in the secure repository of the Registry. A privacy statement describes the technical and organizational privacy protection measures. This includes a procedure whereby nursing home residents can exercise their rights. The boards of directors of the nursing homes and the nursing home physicians will receive information on the applicable legal aspects and will be asked whether they support the implementation of an opt-in or opt-out procedure.
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| Accountability |
Ultimate accountability of the Registry lies with the steering committee:
The steering committee is the highest governing body. The steering committee is responsible for the final decision on approval of data requests based on the assessment of the data access committee and privacy committee.
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| Integrity |
The integrity of the reuse of data is addressed by:
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The data access committee, which is responsible for a data request approval procedure based on predefined assessment criteria. The procedure is designed to stimulate that:
Data reuse by third parties is in line with the aims of the Registry and is being used in such a way that is beneficial to nursing home residents, nursing home physicians, and nursing home organizations; The privacy of data subjects is protected.
The scientific expert committee, which will maintain close links with research communities. This will help achieve the Registry’s aim to contribute to public and scientific issues regarding care provided by nursing home physicians in nursing homes. Scientific experts within this committee advise the steering committee about developments in older adult care and related research.
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| Participation and inclusiveness |
Participation and inclusiveness are served by:
The involvement of parties in governing bodies representing nursing home residents, nursing home physicians, boards of directors of nursing homes, and professors in medicine for older adults. The fact that the steering committee will inform and consult the other governing bodies on a regular basis.
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| Impartiality and independence |
All committee members are required to act impartially, putting aside their personal or professional interests, to reach consensus in the best interests of nursing homes, their residents, and physicians.
If members of a committee come to different conclusions regarding the approval of a request for data from a third party, the chairman tries to come to an agreement. Members of the data access committee and privacy committee are not allowed to be involved in the assessment of their own requests for access to data.
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| Transparency |
Transparency is incorporated in multiple rules and regulations. They include the following measures:
The governance framework, privacy statement, assessment procedure, and content of a contract between a nursing home and the data processor (ie, Nivel) are published on the internet. All granted requests for data are published on the website of Nivel. Nursing home residents and their representatives receive information on the Registry that is complete and in an understandable format. The boards of directors of nursing homes and nursing home physicians receive information on the aim and scope of the data set in the Registry, governance framework, privacy statements, and contracts. In addition, they are offered the opportunity for an individual meeting to ask any questions they might have. Research conducted with data from the Registry will always be published in an open access publication.
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| Effectiveness, efficiency, and responsiveness |
To enhance that the aims of the Registry are being met in an effective and efficient fashion way:
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| Reflexivity and continuous quality improvement |
Continuous learning from developments in the nursing home sector, prior experiences with the governance framework, and the Registry’s data reuse is stimulated by:
Periodic evaluation of the governance rules and regulations, scope and content of the data set, and reuse of the data for research and feedback information for nursing home physicians; The fact that all governing bodies provide advice to the steering committee on relevant themes, for example developments in the nursing home sector, research, privacy, and ICT, either at the request of the steering committee or on their own initiative.
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