18 June 2019

Data sharing accord to promote research from bench to bedside

Data Sharing to Promote Research

A pioneering agreement to make it easier for researchers to utilise de-identified patient data to further health and medical research has been welcomed by Sydney Local Health District.

Chief Executive Dr Teresa Anderson AM signed the Data Sharing Accord on behalf of the District with Sydney Health Partners’ Executive Director Professor Garry Jennings AO.

The Accord standardises the information researchers are required to provide in order to get approval to conduct research that involves patient data.

Dr Anderson said the Accord will boost researchers in their efforts to increase the pace at which research is translated from the lab to patient care.

“This Accord is really historic; to be able to use data in a way that informs research and clinical practice for the very best outcomes for our patients is really exciting,” Dr Anderson said.

The Accord has been stringently designed to keep patient data in line with strict privacy safeguards.

“The Accord deals with these important considerations upfront, which will streamline our processes, make ethics and governance reviews much easier and, most importantly, give researchers access to data that will enable us to transform healthcare.”

The Data Sharing Accord has been developed in consultation with ethics and governance committees at Northern Sydney Local Health District, Western Sydney Local Health District, the Sydney Children’s Hospitals Network (at Westmead) and the University of Sydney.

The University of Sydney’s Fellow in Clinical Informatics, and one of the authors of the Accord, Dr Felicity Gallimore, said the agreement addresses a widespread and persistent complaint in the medical research community about the lack of consistency in the information required by different health services in order to give ethics approval.

“Researchers seeking to access health data from more than one local health district are faced with, and sometimes confused by, answering different questions from the different jurisdictions,” Dr Gallimore said.

“The Accord means that the same comprehensive information will be required by all health services within Sydney Health Partners and provides researchers with a framework so they don’t need to keep reworking and reinventing their application every time.

“If a Human Research Ethics Committee in one District is satisfied with an application, the standardisation of required information under the Accord will make it relatively simple for the researcher to satisfy other Districts.”

University of Sydney Professor Jonathan Morris, another Accord author, said the ability to more easily access research data from more than one District will be enthusiastically welcomed by the research community.

“Researchers who are interested in improving health care desperately want access to data, particularly the more granular data that resides within hospitals,” he said.

“The guidance provided by the Accord will mean approvals will be quicker, access to data will be quicker and research findings will therefore be quicker.”

Sydney Health Partners was formed in 2015 with the aim of removing or reducing the barriers to the efficient and effective translation of health and medical research into clinical practice.

Professor Jennings said the Accord is a prime example of how the partnership works together to enable research.

“Data security is such a hot issue now and there is nowhere where it is more important than in health. There is a great appetite for this Accord because it will help health service executives to be assured that appropriate measures have been taken if their data is being used for research.”

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