Consumer Advisory Group (CAG)

CAG Chair

Ms Ornella Clavisi

Research and Knowledge Manager, MOVE muscle, bone and joint health, Australia

Ornella Clavisi is the Chair of the ANZMUSC consumer advisory group and is currently the Research and Knowledge Manager at MOVE muscle, bone & joint health, a consumer organisation representing people with musculoskeletal conditions.  In her role Ornella manages MOVE’s research program which funds researchers through project grants and scholarships as well as fostering consumer involvement in all aspects of research. She also has expertise in research methods, systematic reviews and evidence based practice and policy.  She has previously worked for the National Trauma Research Institute as  program manager working on large scale knowledge translation trials in traumatic brain injury and managing an Evidence Service for the Victorian Transport Accident Commission and WorkSafe Victoria; as the Research Manager of the Australian and New Zealand College of Anaesthetists (ANZCA) Trials Group; and the Monash Institute of Health Services Research developing evidence based reviews for the Medicare Benefits Advisory Committee and Pharmaceutical Benefits Advisory Committee.

CAG Members 2020

Ms Suzie May, WA

Suzie Edward May has been an active consumer advocate in musculoskeletal disease since 2005, with Arthritis and Osteoporosis Western Australia and Arthritis Australia.  She is the author of ‘Arthritis, pregnancy and the path to parenthood’ the only book of its kind to discuss issues of pregnancy and parenting with chronic arthritis from a consumer perspective.  Suzie has been lecturing medical and allied health students at various universities on the ‘lived experience’ of musculoskeletal/chronic disease since 2006 and is a regular keynote speaker at various health events.  As a qualified Lawyer and Welfare Officer, Suzie has had a varied career in mental health, social welfare, justice and prison reform, and public health governance.  Suzie is currently the Deputy Chair of the East Metropolitan Health Service Board in Western Australia and a Researcher at the University of Western Australia Law School.

 

 

Ms Annie McPherson, VIC

President and founding member, Ankylosing Spondylitis Victoria Inc. VIC

Annie is 60 years old and originates from country Victoria, Numurkah and has lived in Kew for the past 40 years. She has Osteoporosis, Psoriasis and severe Ankylosing Spondylitis (AS). She was first affected by Ankylosing Spondylitis (AS) and bed-ridden for 3 months in 1971. After expending considerable periods of time managing her AS, undergoing a number of surgical procedures, working part- time and juggling home life, she retired in July 2003. In 2002 and 2003, while recovering from hip replacement surgery, she observed that many people with AS were finding their rehabilitation from surgery and return to everyday life extremely difficult. She realised that these difficulties were exacerbated by the lack of awareness and support of AS arthritis conditions amongst the general community. In 2004, via Arthritis Victoria seminars, she came into contact with like-minded individuals, Greg Tate, author of AS national newsletters, Dr Lionel Schachna, a rheumatologist who had recently returned from working in United States and had joined the Austin Hospital’s Spondylitis Clinic. A group of enthusiastic dedicated volunteers convened at the Austin Hospital and together with Greg, Lionel and herself, formed the AS Group of Victoria, as a peer support group for this specific condition.

 

Ms Jacqui Gibson, VIC

Community Reference Group Committee member, Australian Health Practitioner Regulation Agency (AHPRA), VIC

Jacqui has provided community feedback on wide-ranging topics that AHPRA considers including issues relating to statutory offence complaints and has advised on the draft form used to file a statutory offence complaint. She has participated in AHPRA’s National Board conference for past three years including workshops on the NRAS Risk-Based Regulation Program and advised on possible areas for exploration and data collection. She is also an ongoing community representative on The Council of Education (CoE) which is the educational governing body of the Australasian College for Emergency Medicine. Jacqui is a community member of the Inner South Community Health Services which provide health and community services in the inner southern region of Melbourne. She has contributed as a Peer Mentor for the Health time and Women Yarning (Aboriginal women health promotion group). Apart from this, she has also assisted in the development of the Quality of Care report for the Department of Health from 2010 -15. She is a community representative on the Human Ethics Advisory Group in Cohealth.

 

 

Mr Ben Horgan

Consumer advocate, Consumer and Community Health Research Network

Ben Horgan is currently working for the Consumer and Community Health Research Network as a Consumer Advocate sharing his time between Edith Cowan University (ECU) and Curtin Universities. Ben brings over 15 years of advocacy experience to the role. He has worked at Arthritis Australia as a consumer advocate and between 2011 – 2015 worked in primary health care organisations supporting patient driven, evidence based, multidisciplinary care. Ben has been a consumer representative in state and national committees and was the first patient to be appointed a National Coordinator by the World Health Organisation initiative, The Bone and Joint Decade 2000-2010. As a patient research partner he has worked for nearly two decades in local, national and international research projects. Ben has attended 5 OMERACT conferences since 2004. He was a member of the Patient Research Partner leadership group between 2006 and 2010. During his time with OMERACT, he has been directly involved in several projects including the Flares group, The Health Literacy Group, The Pain Group (ongoing) and the JIA group (ongoing). His current role enables him to utilise all his experience and evidence based best practice models to improve collaboration between researchers, health consumers and the community. The results will enable increased levels of involvement from health consumers and community, more relevant health research, plus increased rates of translation into health service delivery.