Population Health Research Net

The Population Health Research Network (PHRN) recognises, supports and values the central role of consumers and community members in health and medical research.

As such, it has developed key strategies and programs to ensure that the ongoing development of the PHRN, and its role in enhancing Australia's data linkage capabilities, is done with understanding and input from health consumer groups and the wider community.

The PHRN also recognises and supports the 'Statement on Consumer and Community Participation in Health and Medical Research ( NHMRC/CHF (2001) National Health and Medical Research Council/ Consumers' Health Forum of Australia, Canberra) and acknowledges the central role of consumers and community members in the governance and operations of the Network.

Background

The PHRN has been funded to provide data linkage infrastructure to support health and health related research across Australia.

Its ultimate aim is to help improve health and well-being and enhance the effectiveness and efficiency of health services by improving the quality and accessability of health data provided to approved researchers. (Read more on the PHRN's data linkage network).

Fundamental to the governance and successful day -to-day operation of the PHRN are its efforts to ensure an individuals right to privacy in the data linkage process.

Extensive efforts are being made from both a privacy and a security point of view to enable the PHRN to enact and maintain the best possible safeguards to ensure its work, and that of its data linkage units, is safe, secure and respectful. (Read more about our privacy and security measures).

INVOLVING CONSUMERS AND THE COMMUNITY

The PHRN is very focused on involving health consumers in its ongoing development and part of that focus is ensuring consumers have a voice in PHRN planning.

As a result, health consumer advocates and experts hold key positions on a number of PHRN committees.

PHRN Management Council

The PHRN Management Council supports the integral role of consumers in the decision-making processes of the main governing body of the Network. Its membership is in the process of being expanded to include an experienced health consumer whose input will be representative of the views and expectations of the wider consumer and community.Read more

PHRN Ethics, Privacy and Consumer Engagement Advisory Group

The Advisory Group is a sub-committee of the PHRN Management Council and provides advice to the main governing body around ethics, privacy and consumer/community issues relevant to the Network. Membership of the Advisory Group includes two experienced health consumers (one a nominee of Consumers' Health Forum of Australia), as well as individuals with expertise in the areas of ethics and privacy.Read more

PHRN Participant Committees

Each PHRN Participant is required to have consumer and community participation in their development and researcher project planning as outlined in the PHRN Funding Agreement.

In accordance with this requirement, all have incorporated consumer and/or community representatives into their management committees or subcommittees:

• SANT DataLink: A Consumer Reference Group provides advice and support to their Steering Committee

• Victorian Data Linkages (VDL): The VDL Steering Committee and Advisory Group (SCAG) is in the process of recruiting two consumer/community members

• Tasmanian Data Linkage Unit (TDLU): The TDLU Management Committee has a community representative member

• Queensland HealthlinQ: The HealthLinQ Management Committee includes two consumer representatives

• PHRN NSW/ACT Secure Unified Research Environment (SURE)/ Secure Data Exchange (SDE) program: The Community Advisory Group associated with the Centre for Health Record Linkage (CHeReL) provides advice and feedback to the PHRN NSW/ACT's Management Committee.

PHRN Consumer and Community Participation Policy

The PHRN Consumer and Community Participation policy has been developed by the PHRN Ethics, Privacy and Consumer Engagement Advisory Group and was endorsed by the Management Council in November 2010. The policy is directed at ensuring that the development of the PHRN infrastructure and all research conducted using the PHRN infrastructure includes the appropriate participation of consumers and community members and that this is undertaken in a consistent way across the Network.Read more

PHRN Consumer and Community Training / Community Conversations

The PHRN is also actively involved in the planning and provision of Consumer and Community Training for PHRN Participants and in the organisation of Community Conversations to ensure ongoing input from health consumers and advocates. Read more