JMIR Publications

ABSTRACT

Background:

In the nursing home sector, reusing routinely recorded data from electronic health records (EHRs) for knowledge development and quality improvement is still in its infancy. Trust in appropriate and responsible reuse is crucial for patients and nursing homes deciding whether to share EHR data for these purposes. A data governance framework determining who may access the data, under what conditions, and for what purposes can help to obtain that trust.

Objective:

To describe the development of a governance framework for the “Registry Learning from Data in Nursing Homes” – a national registry for EHR data on care delivered by elderly care physicians in Dutch nursing homes – to allow the reuse of these data for research and quality improvement of care.

Methods:

Relevant stakeholders representing practice, policy, and research in the nursing home sector were identified. Online semi-structured interviews were performed with 20 persons from 14 stakeholder organizations. Main aim of the interviews was to explore stakeholders’ perspectives regarding the Registry’s aim, data access criteria, and tasks and composition of governing bodies. Interview topics and analyses were guided by eight principles regarding governance for reusing health data, as described in literature. Interview results, together with legal advice and consensus discussions by the Registry’s consortium partners were used to shape rules, regulations, and governing bodies of the governance framework.

Results:

Stakeholders value the involvement of nursing home residents and their representatives, elderly care physicians, nursing homes’ boards of directors, and scientists in the governance, and see this as a prerequisite for a trustworthy data governance framework. For the Registry, involvement of the groups mentioned above can be achieved by: 1) a procedure in which residents can provide their consent or can object to the reuse of the data; 2) transparency about the decisions that are made; and 3) giving them a position in a governing body. In addition, a data request approval procedure based on predefined assessment criteria helps to ensure that data reuse by third parties is in line with the aims of the Registry, is in the best interests of the nursing home sector and protects the data subjects’ privacy.

Conclusions:

Early involvement of a broad range of stakeholders with rights or responsibilities regarding EHR data and/or an interest in its reuse is important in developing a data governance framework that can generate trust in the appropriate and responsible data reuse. By including representatives of nursing home residents, elderly care physicians, boards of nursing home directors, and elderly care academic networks in governing bodies, and by taking measures to safeguard subjects’ privacy, the governance framework of the Registry Learning from Data in Nursing Homes ensures that routinely recorded EHR data will be reused in an ethical, legal, and secure way.