The full potential of Patient Registries in developing cost effective and quality health services in Ireland is presently undervalued. The Patient Registries Working Group is calling for an urgent national strategy to further develop and in some cases to sustain existing patient registries in Ireland as an invaluable tool for quality and cost effective patient services.
Patient Registries should be central to the planning, delivery and review of health care in Ireland as they provide data and analysis to:
• Observe the trends and course of a disease
• Enable the more effective use of limited resources
• Inform clinical and policy decision-making at a national and institutional level
• Illuminate practice patterns and variations in practice patterns
• Assess clinical outcomes: effectiveness and safety
• Explore the impact of the disease and treatment on patients, including health-related quality of life and other patient-reported outcomes
• Assess health economic inputs, outcomes and impact
A report commissioned by the MRCG in 2011 and produced by Dr Fionnuala Donohue analysed the existence and use of Patient Registries in Ireland,
This Report report identified the following
- Registries that are fit for purpose and produce tangible outcomes which have a positive impact on healthcare systems have a beneficial role to play in the health services.
- While consent based registries are best practice, there are some situations where it is acceptable to waive consent in order to ensure that a registry can fulfil its function
- Linkage of registry data with data on other registries or databases can avoid duplication in data collection and maximises the potential utility of the information collected while supporting the provision of integrated care.
- A national policy and guidelines for patient registries are important in ensuring standardisation and best practice.
- Good governance, both within registries and through a formal external oversight function, is essential to the successful operation of registries and to public trust.
- Confidentiality, privacy and security must be guaranteed with systems and procedures including, privacy impact assessments, written access protocols, access audits and regular security audits.
- Wider use of personal health information and linkage of datasets increases the potential for misuse of data. The introduction of sanctions would both act as a deterrent and provide public reassurance.
- A sustainable and transparent funding mechanism for registries linked to an ongoing process of evaluation is essential from both a practical and ethical view point.
See attached for the full report
An analysis of the prevalence and usage of Patient Registries in Ireland, identification of the gaps and challenges and recommendations on the establishment and usage.