Enhancing governance, data sharing, consumer involvement and clinical trials support.
The past decade has seen growing recognition of the importance of consumer and community involvement in healthcare delivery. There is strong evidence that by involving health consumers in designing services, care pathways and policies leads to more patient-centred care.
More recently, there has also been an increased focus on increasing the involvement of community members in health and medical research. Consumer involvement can ensure research is addressing questions that are important to patients and their families, increasing public accountability and confidence. It can also improve the quality and outcomes of research, while also decreasing costs.
Through greater consumer involvement, we seek to:
Clinical trials provide the essential links between basic scientific research and the eventual translation and implementation of discoveries or evidence into routine clinical care. They can resolve uncertainties about disease management and provide impetus for the discontinuation of low value care. Most importantly, clinical trials can give hope to patients who have not responded to conventional treatment by providing access to leading specialists and innovative therapies, typically resulting in better health outcomes.
Yet despite their enormous value, clinical trials in Australia often face considerable challenges.
Their performance and productivity can be limited by cost and complexity, as well as regulatory, ethical and governance requirements. In addition, clinical trials are sometimes constrained by difficulties in recruiting enough patients, and by shortfalls in the supply, capacity and capability of trials staff.
Sydney Health Partners is working at local, state and national levels to support improvements in clinical trials capacity and recruitment.
SHP has coordinated ethics and governance officers from across the Partnership, and elsewhere in NSW, to make site access approval processes more consistent and streamlined. It is hoped that by standardising governance review checklists between sites, access for researchers will be simplified, particularly for those investigators seeking to conduct research at multiple sites.
Meanwhile, a collaborative group led by Northern Sydney Local Health District (NSLHD) is investigating the feasibility of a health service “passport” which would streamline approvals and processes involved in performing collaborative research. The proposal aims to eliminate the need for researchers to repeatedly provide the same credentialing information in order to gain access to patients and health data at different locations and in different IT systems.
Sydney Health Partners has published a consolidated list of Human Research Ethics Committee meetings dates across the partnership. The HREC Calendar allows researchers to find the next suitable meeting to which they can submit their research for ethics approval.
In 2019, Sydney Health Partners’ five founding partners signed a ground-breaking Data Sharing Accord. The agreement standardises the information required from researchers when applying for access to de-identified patient data, making it easier for researchers to obtain ethics and governance approval to use patient data in their research.
A complementary Data Sharing Protocol Checklist provides common-sense language guidance on the issues researchers need to consider when requesting health data across organisational boundaries.
Held at the Westmead Institute for Medical Research in late March, Roadshow 2025 – Translation in Action, was the first in a series of events which will be staged at SHP partner Local Health Districts throughout the year. The event brought together SCHN staff, including those who are members of SHP’s Clinical Academic Groups (CAGs) … Read more
Read more of the post Roadshow Highlights Research Translation at SCHN
The Consumers in Health Research: the Practicalities workshops will be held at University of Sydney, Camperdown on March 5 and Club Parramatta on March 20. The four-hour face-to-face workshops are designed to provide an in-depth understanding of the ‘how’ and ‘why’ of involving consumers in research. Two facilitators – one consumer, one researcher – will … Read more
Read more of the post SHP Announces More Workshops for Consumers and Researchers
Held at the University of Sydney on April 4, the ReConX workshop was attended almost equally by consumers interested in research and researchers seeking to better understand how to effectively engage consumers in their projects. A highlight of ReConX was a panel which discussed real world examples of effective consumer/researcher partnerships. Panel member, Professor Gopala Rangan from … Read more
Read more of the post Researchers and Consumers Connect through Sydney Health Partners
