Newly released report
This week, Health Consumers NSW released our latest report: Single Digital Patient Record: What do health consumers and consumer organisations think? It provides key insights into health service users’ and consumer organisations’ expectations and concerns around the Single Digital Patient Record (SDPR). We consulted with our members about this late last year, culminating in webinars and online consultations in November and December 2024.
Consumers and consumer organisations are broadly supportive of the introduction of a SDPR. The bringing together of patient records from across NSW is generally seen as a positive thing, and patients and carers hope it will reduce the need for them to repeat their stories to different health professionals. However, we heard about several concerns that need to be addressed to achieve successful implementation of the SDPR.
Some of the key concerns consumers identified include:
- Lack of Information – Our consultations were the first time many consumer leaders and consumer organisations were made aware of the SDPR. People want clearer public-facing information about the SDPR and its implementation,
- Lack of consumer engagement – many consumer leaders and consumer peaks were surprised and disappointed that they had not been proactively approached to be part of the design of the SDPR. Consumers feel the consultation, to date, has been very narrow and more work needs to be done to engage consumers and consumer organisations, especially those from marginalised communities.
- Privacy and Security – consumers are concerned about the potential privacy and security implications of a SDPR. People are requesting more information about what safeguards will be built into the system and what are the repercussions for anyone involved in a privacy or security breach.
- Consumer control – consumers are hoping a new electronic medical record will deliver more control to consumers and carers. The strong message is that consumers want to be able to have easy access to their full record, add information important to their care, and be able to curate who has access to their record and in what circumstances.
- Scope of record – consumers hope that, eventually, the record will also contain information and be able to be shared by services outside of NSW Health, including GPs, allied health, specialists, and private and NGO providers.
Our report provides valuable insights into the hopes, expectations and concerns consumers and consumer organisations in NSW have about the introduction of the SDPR. We have shared it widely with the relevant organisations and hope you will find it useful whether you advocate for patient rights or implement the SDPR.
Health Consumers NSW would like to thank all who attended our information and consultation sessions and shared their perspectives and questions with us, which led to the development of this report.
