Kidney Health Special Interest Groups and Consumer Engagement Program
The Kidney Health Special Interest Groups and Consumer Engagement Program initiative plays an important role in encouraging and facilitating consumers to assist Kidney Health Australia amplify the voices of people living with kidney disease, and foster support and improvements in treatment and care.
This initiative follows on from the National and State Consumer Council structure which was implemented in 2003. Over time these Councils provided valuable service and achieved many outcomes through the input and feedback of many amazing consumers, and we sincerely thank all those who were previously involved for their contribution. It is hoped that this refreshed consumer engagement platform will increase the opportunities for even more people living with kidney disease to be involved across the board. This structure will allow for engagement in specific areas of interest or expertise and will offer flexibility in involvement, not holding any individual to an ongoing commitment.
At Kidney Health Australia we know consumer circumstances can change rapidly therefore roles and responsibilities will be offered so people can opt in or out, participate in meetings either face to face or online, discuss issues individually or as a group or simply offer advice by reviewing documents or collateral. We also recognise that many have been reluctant or unable to participate in ongoing formal meetings for many reasons (i.e. living regionally or remotely, time commitments, interaction preferences, anxiety, disease status and health condition) therefore we hope this restructuring of advocacy roles for our consumer will be positively received, achieve increased participation and most importantly be impactful!
Purpose
Kidney Health Special Interest Groups and Consumers will be engaged and/or facilitated to provide a range of consumer perspectives, personal experiences and be as representative as possible of those living with kidney disease to assist Kidney Health Australia achieve its mission.
Kidney Health Australia has a clear purpose. We want to achieve good kidney health for all Australians. As the peak body for kidney disease in Australia, we bring together the many voices within the kidney community, advocating on their behalf for health initiatives that will improve their quality of life. Our ambitious vision is a future where every Australian has the ability to enjoy good kidney health. This will only be possible through investment and innovation in treatments and research. We are committed to supporting our clinical and research community to strive to achieve this remarkable outcome. As we work towards this, we remain committed in our mission to decrease the incidence of kidney disease, and save and improve the lives of Australians affected by kidney disease. Through our awareness, early detection and support programs, we will continue to ensure every Australian at risk of, or affected by, kidney disease, receives the best possible support to enjoy a good quality of life. The consumer voice is an imperative requirement in the pursuit of this vision and mission and in all the work that Kidney Health Australia embark on and we encourage our kidney community to be involved in this journey through this advocacy initiative.
Kidney Health Special Interest Groups and Consumer Engagement Program
• Act as a link to the wider patient community, identifying and prioritising any unaddressed issues or changes impacting kidney patients and their carers, either negative or positive.
• Provides Kidney Health Australia and, where possible, the broader clinical community with an open and frank mechanism for feedback on policy, priorities, programs, collateral and bodies of work supporting people living with kidney disease.
• Advises and supports Kidney Health Australia in regard to consumer engagement and involvement in kidney research.
• Supports Kidney Health Australia, where requested, in advocating for change to public health policy from the kidney patient perspective.
• Supports Kidney Health Australia, as available, at public events that raise the profile of kidney disease.
• Works with Kidney Health Australia to educate about, and raise the profile of kidney disease and the programs and services offered by Kidney Health Australia within local communities and networks.
Process
Kidney Health Special Interest Groups and Consumers are engaged or facilitated as required and the following are examples of current advisory roles or groups.
Committees, Advisory Groups with Consumer Advocates:
• Clinical Advisory Committee
• Research Advisory Group
• Primary Care Education Advisory Committee (PEAK)
• CARI Guidelines Advisory Group – Indigenous Yarning Kidneys Project
• Kids and Youth Advisory Group
Special Interest Groups (current and proposed future examples):
• Kids and Youth
• Diet and Nutrition
• Health and Wellbeing
• Travel and Dialysis
Get involved
We want to know the current issues affecting our kidney community. If you’d like to share your voice, register your interest in the Consumer Engagement Program and/or be kept informed of Special Interest Groups as they are formed. We encourage you to contact us by emailing [email protected].