Patient registries are a key concern for IPPOSI because registries can help improve patient outcomes. Here is how:
- Registries can provide decision-makers with the information they need to make policy and budget decisions
- Patient registries attract clinical research, which has a number of benefits for patients:
- Patients get access to new, innovative treatments
- Patient outcomes improve when they take part in a clinical trial – even when they are in the placebo arm of the trial
In order to raise awareness of the importance of patient registries and their contribution to improvements in health policy, research and services, IPPOSI has:
- Facilitated a session on patient registries as part of the 2015 Annual Round Table Meeting with the Secretary General of the Department of Health with contributions from patients, clinicians, regulators, scientists and industry. This discussion was captured in the Outcome Report (below). Annual Round Table Meeting with the Secretary General: ‘Health Information: Developments & Next Steps’ – 2015
- Provided an evidence based rationale for the development of a national strategy for Patient Registries in Ireland. This report (Towards a National Strategy for Patient Registries in Ireland – cinsiderations for Government (Towards a National Strategy for Patient Registries in Ireland – Considerations for Government) findings were primarily drawn from a 2011 seminar jointly organised between IPPOSI and the MRCG, that brought together experts and key stakeholders in this area.
- Assisted a number of patient organisations to design and establish patient registries and active IPPOSI members and members of the IPPOSI board have a great deal of experience in this area.