The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers and those with an interest in healthcare consumer affairs. CHF works to achieve safe, quality, timely healthcare for all Australians, supported by accessible health information and systems.
As part of a larger project CHF has been contracted by the Australian Department of Health to develop a consumer information resource on the National Clinical Quality Registry and Virtual Registry Strategy 2020-2030. This strategy aims to drive continuous improvements in the quality and value of health care, to achieve better health outcomes for all Australians.
Clinical Quality Registries (CQRs) monitor the quality (appropriateness and effectiveness) of health care by routinely collecting and analysing clinical performance data. A mature CQR can provide clinicians, health service managers, patients and other stakeholders with ongoing, risk adjusted, benchmarked feedback on clinical practice and patient outcomes, to improve the standard of care. There are also virtual registries, which draw data from existing platforms, such as Electronic Medical Records (EMRs) or data lakes and data warehouses. Some CQRs also collect patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs).
Currently in Australia, there are a range of CQRs that measure the quality of care and medical devices, for specific diseases and conditions. Some examples of CQRs in Australia include the Australian and New Zealand Hip Fracture Registry, the Australian Breast Device Registry, and the Australian Orthopaedic Association National Joint Replacement Registry.
The resource will be a plain English guide that is compliant with Web Content Accessibility Guidelines (WCAG) and includes the following elements:
- Why a National Strategy has been developed (Rationale, Vision)
- What CQRs can do to improve care for patients
- How a CQR works (include an example showing feedback loop)
- Consumer involvement in CQRs
- Principles for consumer co-design in CQRs
- How can consumers be involved in CQRs (i.e. involvement in steering committee decisions, co-design of minimum data sets that guide data collection, and PROMs)?
- Where will the data for the CQRs be collected and used (clinical data and patient reported data)
- PROMS and PREMS in CQRs:
- What are PROMs and PREMs?
- Why are they collected by CQRs?
- How are they collected by CQRs?
- Consumer co-design principles for PROMs and PREMs
- Strategy implementation
To that end we are establishing Clinical Quality Registry Project Consumer Working Group (the Working Group) to codesign this resource with consumers, to better ensure the resource is effectively designed and targeted to be allow consumers to understand and engage with the National Clinical Quality Registry and Virtual Registry Strategy.
All CHF members, consumer representatives and other interested parties are welcome lodge an expression of interest to be part of the Working Group. The maximum number of people within the group at any time will be 10. This cap helps keep the groups manageable while assuring a diverse range of views can be included. Applicants will be chosen through expressions of interest via the CHF website.
The group will be facilitated by a CHF Secretariat member. Members of the group may be asked to assist with the facilitation of Working Group meetings. The group is advisory to CHF, with final decisions on the resource remaining with CHF and the Australian Department of Health.
The group will not meet face-to-face. The intention is to use a mixture of online forums and videoconferencing such as Zoom. Support for people not familiar with either of these will be offered.
The time commitment is to attend six (6) meetings via videoconference, read documents and contribute to discussion during and between meetings during the period January 2021-June 2021. The precise schedule and timing of the meeting will be determined as the project develops. The videoconference meetings are initially expected to take approximately 2 hours with an additional 1-2 hours between meetings of discussion, reading and preparation.
Sitting fees will be offered to participants at the remuneration tribunal rate by CHF, for a total of 21 hours per consumer representative across the six-month period of the project.
Expressions of interest to join this working group can be submitted on our website. The EOI process will close at midnight, Friday 18 December 2020.
Further information about the purpose and operation of the Consumer Working Group, as well as more information about what CQRs are, can be found here. If you have any questions, please contact our Research & Policy Officer, James Ansell on firstname.lastname@example.org.