The patient-reported measures strategic framework
The NSW Health PRMs Strategic Framework was developed to align existing initiatives and platforms, so that PRMs can be used across the system to enable patients to have greater input into their care.
The framework outlines the following guiding principles for the PRMs Program:
- Patient-centred: PRMs and associated processes are patient-centred and give patients a greater say in their care.
- Iterative co-design approach: PRMs are designed with input from patients, carers, clinicians and decision makers.
- Integrated: PRMs cover the patient journey across all care settings and are integrated to allow a holistic view.
- Fit-for-purpose and meaningful: PRMs need to be valued and useful for diverse groups of patients, carers, clinicians and decision makers.
- Trusted and reputable: The tools are evidence-based, culturally appropriate and easily understood.
- Consistent: The information collected and the systems used allow for comparisons across dimensions of care (core functionality, symptoms and quality of life), and allow flexibility for tailoring to local needs.
- Universal coverage: PRMs are universal but have adequate variation to distinguish between cohorts.
- Sustainable: PRMs support a sustainable health system that delivers effective and efficient care into the future.
- Transparent: Data are available in real time and accessible at multiple levels of the health system.
- Staged implementation approach: Supports the incremental adoption of PRMs and ensures adequate change management and resourcing.
The PRMs program governance structure is outlined in the diagram below.
PRMs is ultimately governed by Value Based Healthcare Steering Committee. Six groups contribute to that committee via the PRM Steering Committee, through the PRM Implementation and Design Working Group: Project Control Group, HOPE Program Delivery Team, Analytics Focus Group, Primary Care PRM Coordination Group, Aboriginal Health Focus Group and Other Design Focus Groups as required. The PRM Steering Committee also reports to the Integrated Care Implementation Group and to the eHealth Executive Council via the Clinical Portfolio Governance Committee.
Functions of the governance groups
The responsibilities of the governance groups that oversee the PRMs Program are to:
- endorse the PRMs tools, data elements, definitions and protocols (clinical and non-clinical) to be used in the statewide PRMs data collection, enabling appropriate use at the individual, service and system level
- ensure that the views of key stakeholders across the NSW health system and primary care, including priority patient populations and cultural groups, appropriately inform the choice of PRMs tools and methods of collection
- ensure the IT solution effectively meets and understands the technical implications of different tools and processes to meet the strategic goals of the program
- provide guidance on the implementation of the HOPE system, ensuring it is suitable for use across the supported clinical contexts and care settings in the health system
- advise on the education, training and change management approach to support the successful adoption of the PRMs IT solution across the health system
- advise on education, training and change management approaches to support the use of effective use of PRMs in clinical practice.
- report on progress of the IT solution project, including: milestones, risks and issues, budget allocation, monitoring of business benefits against the benefits realisation framework, quality assurance and audit, and overall performance
- provide advice on issues related to the statewide collection and use of PRMs data, to ensure this aligns with the NSW Health PRMs Strategic Framework.
Data Governance and Management Framework
Establishing a Data Governance and Management Framework for the PRM data held by the Health Outcomes and Patient Experience (HOPE) information system is a requirement in order to:
- enable decision making though clarity on roles, responsibilities and accountabilities
- establish consistent policies and standard operating procedures
- establish the foundation on which additional data-driven value-added services can be supported / delivered (for primary and secondary uses)
- provide ongoing alignment with current privacy and related policies and legislation
- provide clarity over the understanding of the various stakeholders and their part in ensuring overall quality and integrity of PRM data held within the NSW health system data
- enable and support the dual goals of improved responsiveness in meeting the demands of a changing health system and to ensure ongoing benefits to patients and the NSW health system.
The Framework aims to answers the following key questions:
- What is the intended use of PRM data?
- How will PRM data be governed?
- What are the primary roles and who is accountable?
- What policies and procedures are required?
Implemented effectively, the Data Governance and Management Framework for PRM data held within the HOPE system will:
- ensure decision making through the clear articulation of data governance processes and structures for communicating complex activities and decisions
- reduce operational friction due to a clear alignment between data governance and technology governance
- minimise the risk of poor data integrity through well-coordinated and efficient assurance processes that provide confidence that the HOPE system is a trusted source for PRM data
- well-orchestrated processes and procedures for the management of the HOPE system
- reduce waste and administrative costs by defining clear roles and responsibilities for data management
- ensure transparency over roles, responsibilities and accountabilities at all times
- identify known roles, their responsibilities, and the escalation route to reduce time and effort for resolving data issues
- provide an ability to verify that PRM data is fit for its intended use.