What can New Zealand learn from experiences in other countries around personal health records?
Most countries face an ageing population, increasing prevalence of chronic diseases and experience an ever tightening budget for providing health services. Involving patients in their own care by allowing them access to their patient data is a trend seen in many places. A number of commercial solutions that allow individual users to gather, store, use, and share health information are offered globally. It is, however, noticeable that only a few countries' governments have offered citizens access to their own health data on a national level. Denmark, Estonia and Australia are three countries where all citizens currently have access to their personal health data via an e-portal solution. Although several literature studies show that patient-accessible electronic health records influence certain aspects of patient-centered care, the possible contribution of these implementations to patient-centered care as a comprehensive concept needs to be structurally evaluated.
Worth noting that concerns from professionals about the impact of transparency on the patient-clinician relationship as well as the importance of a patient-centered attitude need to be addressed. Potentially significant benefits for disadvantaged groups can potentially be achieved only through easily accessible and user-friendly patient-accessible electronic health records. Further, there is sparse research on assessing views towards data sensitivity and sharing. The eleventh-hour decision by the NHS in England in November 2022 to halt the automatic, blanket roll-out of the ‘Citizen’s Access Programme’ that would have given all NHS patients in England prospective online access to their GP-held records the day before it was due to come in, needs to be borne in mind as a case example.
Our national health information platform, Hira, recently released a new FHIR-based API that will allow users to access more information about their medicines on the platform. Existing patient portals can only provide users access to information about the medicines prescribed to them by their GP. The latest API extends their access to a range of medicines information, including all prescribing and community dispensing data, based on information sent to the New Zealand Electronic Prescription Service. Hira is currently on its first tranche of implementation, providing access to personal health records, including COVID-19 vaccinations, prescribed and dispensed medicines, primary care summaries, and diagnostic test reports, among others. It is targeted to be completed by June 2024.
Going forward, investments will be required in several areas including technical infrastructure, interoperability of health data, support in legislation, education of both patients and healthcare professionals and well designed patient portals with high usability, including support for patients (eg, how to use the portal, explanations of content and functionality, glossary of medical terms).