MRCG Submission on the Health Information Policy Framework, October 2017.
MRCG Submission on the Health Information Policy Framework, submitted October 2017.
While we welcome the policy framework as currently outlined, we provide below recommendations for inclusion in the final policy.
• Research needs to feature more strongly in the policy and should be considered in a broad sense, to include the analysis of data to generate hypotheses as well as studies undertaken to test them.
• It is important that the overlap between patient care and research is recognised – a strong health information policy can help to blur the lines between the two.
• As a key tool underpinning health research and enabling the capturing and sharing of health information, the importance of patient registries should be addressed.
• Rare diseases need special consideration which should be acknowledged.
• All decision-making bodies and processes around health information need to involve patients.
• Patients need to have access to their data and control over their data.