You are invited to participate in a research study investigating Health Consumers’ perspectives, attitudes and beliefs about participating in data sharing or data linkage consumer groups. This project is an important initiative by the University of Wollongong and Health Consumers NSW and part of a larger study examining how we can use general practice data for research in ways that the public, GPs and other stakeholders will find ethically justifiable and acceptable.
To express your interest or ask further questions, please contact Dr Heidi Green by email: hgreen@uow.edu.au.
Download the participant information sheet HERE.
Building public confidence in the secondary use of general practice data for research
Health Consumers NSW (HCNSW) is a partner in Building public confidence in the secondary use of general practice data for research, a research project with the Australian Centre for Health Engagement, Evidence & Values (ACHEEV) at the University of Wollongong. Dr Anthony Brown is one of the Chief Investigators and HCNSW has designed and is leading the consumer engagement part of the project.
Be part of the discussion
The research team wants to interview health consumers with data-related experiences during their advocacy and health consumer journey. This experience may be as Consumer Representatives, people with health consumer data advocacy experience, or those on advisory groups or committees.
We are seeking your important input on data sharing and data linkage consumer groups within the Australian healthcare system.
Your Insights are Crucial: Your lived experiences and viewpoints provide invaluable insights that shape the direction of data sharing and data linkage consumer groups.
Drive Positive Change: By sharing your thoughts, you directly contribute to a training workshop we will design to assist other health consumers feel confident in participating in data sharing and data linkage consumer groups.
Receive Appreciation: As a token of our gratitude for your time and contribution, each participant will receive a $50 Visa gift card.
Your participation will involve a relaxed conversation with a trained interviewer (excluding Dr Anthony Brown) and an honours student at your chosen time. Your privacy and confidentiality are our top priorities, and all information shared will be used strictly for research purposes.
If you’re passionate about making a difference in healthcare and eager to share your perspectives, we invite you to participate in our interviews. A participant information sheet, with more information about the project, can be downloaded HERE.
How do I get involved?
To express your interest or ask further questions, please contact Dr Heidi Green by email: hgreen@uow.edu.au.
Project Description
General practice data are an important resource for researchers, policymakers and planners. However, the potential use of these data for research is still largely unrealised. Although there is broad public support for the secondary use of health data, the public and some practitioners remain concerned about sharing patients’ health data outside the clinical encounter. To use general practice data better, we must build a public understanding of how the data are used and address concerns about privacy and misuse.
The larger project will use co-design and deliberative approaches to bring together health consumer representatives, community members, GPs, policymakers and regulators, to design a best practice framework for using general practice data for research purposes. The outcome will be policies, practices, and regulatory guidance to enhance the social, ethical and legal acceptability of using general practice data for research.
What will happen to information about me that is collected during the study?
All the information collected from you will be treated confidentially. The transcript and digital recording of the interview will only be accessible to members of the research team, excluding Dr
Anthony Brown.
