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Consumer Advisory Group

The PACT Consumer Advisory Group provides feedback and advice to the PACT Steering Committee on a range of issues that require and benefit from consumer input.

Introducing our Group Members:

Julie Allan

Julie was introduced to Idiopathic Pulmonary Fibrosis (IPF) when her husband, Trevor, was diagnosed early in 2013.  Since then she has been keen learn about the illness and ways of supporting him to have a good quality of life despite the impacts of IPF.  As a couple they have enjoyed several overseas ‘bucket-list’ trips and they continue to enjoy time with each of their 14 grandchildren. Julie is a retired Psychologist and has been involved in both clinical practice and research in a number of areas including the management of anxiety disorders, mood disorders, chronic pain conditions, drug and alcohol dependence, rehabilitation and work-life adjustment issues. Julie has taught in tertiary Psychology and other courses and worked as a Trainer focusing on mood disorders with the Black Dog Institute.  She also has extensive experience working cross-culturally with a range of people from non-English speaking backgrounds. She appreciates the value of communicating research findings in ways that have practical application to everyday life.

Trevor Allan

Trevor Allan was diagnosed with Idiopathic Pulmonary Fibrosis in 2013 and became a patient at the RPA Pulmonary Clinic. He has been taking Nintedanib since July 2014, and his lung function has remained stable since that time. Trevor is married to Julie, they have 6 children and 14 grandchildren. Trevor was medically retired from his role as the Head of Student Equity, Welfare & Disability Services at the University of Western Sydney [UWS) IN 2013. He was the Director of the Disability Services Centre at the Australian National University {ANU) from 1999 to 2007. Prior to this, he was the Regional Disability Liaison Officer for Northern NSW, the Community Educator for Headstart Community Access Program, the inaugural NSW Brain Injury Awareness Week Coordinator, ran his own video production company and was a High School English/History/Media Studies Teacher for 14 years. He was awarded Vice-Chancellor’s Excellence awards at both ANU and UWS and a Citation for Outstanding Contribution to Student Learning at UWS. He was made the first Honorary Life Member of the Australian Tertiary Education Network on Disability (ATEND) in 2014. In all these roles, Trevor has been actively involved in research and development of initiatives to provide enhanced practical outcomes for people. As a person who has personally benefitted from the research and clinical trials conducted by others, he is keen to contribute however he can to future research and development in this field.

Marcia Hooper

I am retired and live on the Sunshine Coast in Queensland. I enjoy pursuits like knitting and reading and see friends regularly (physically/electronically). I have 2 beautiful daughters and 2 gorgeous and entertaining grandchildren. I drive to Brisbane each week to look after them for the day. I worked as a Deputy Principal in a state primary school until mid-2016 and was fortunate to share my days with some talented teachers and students. My IPF journey began in 2013 with an undiagnosed persistent cough. This worsened over time until I was finally sent for a chest X-ray and CT scan in 2017 which showed widespread fibrosis. A lung biopsy in November 2018 proved the diagnosis of IPF and I was able to start on Perfenidone. Unfortunately my liver disliked this drug and so I was referred on to a team with access to trial drugs. I began 2 months of Nintedanib - a prerequisite to entering the Galapagos trial. I was accepted into that trial 12 months ago and my lung capacity seems to have improved from my base line data of 2019. I take a reduced dose (200mg daily) of Nintedanib as the side effects are otherwise too intrusive. I am still able to complete all my chores - although I do have to pace myself and physical activity is limited. Being a member of this PACT Consumer Advisory group allows me to reach out to other IPF patients. Hopefully by sharing our thoughts and concerns as we embark on this journey will lessen the stress and isolation of a little known and little understood disease. While everyone’s experience is unique, sharing concerns may assist in helping to reduce stress about the unknown. Raising awareness of this disease is also important if we are to win both understanding of, and funding for, future research of IPF.

Tania Hyde

Tania is a strategist, connector and consultant with over 20 years’ experience in consulting and operations. She is simultaneously optimistic and pragmatic and passionate about connecting people and driving change. She is keen to make a difference in supporting those impacted by chronic illness to enable them to live their best lives. She runs her own consulting business advising clients in strategy and communications, before which she was the Chief Operating Officer of a boutique advisory firm, which has a focus on transport infrastructure and cities. She began her career as an electrical engineer in the Royal Australian Air Force after graduating from the Australian Defence Force Academy. She is a graduate of the Australian Institute of Company Directors, an Asia Society Asia 21 young leader (2013) and is on the Asia Society’s Global Council.

Jeffrey Kerr

Jeff is 55 years old from Queensland and lives in the semi rural region of Samford which is about 40 minutes outside of Brisbane. He first encountered IPF when his father was diagnosed with the condition in 2010 and while nothing prepares you for the prognosis he had some insite into the disease when he was diagnosed 2019. Jeff has been amazed at the advances in treatment since his Dads passing in 2014, particularly with the availability of anti fibrotic medication in recent times and this has inspired Jeff to participate in a current clinical trial.  He is passionate about the pursuit of improvements in treatment, patient & clinical information and other elements that combine to improve the quality of life for people with IPF, as the medical and patient community progress the quest for a cure some day. From a professional perspective, most of Jeff’s career has been focussed on the design, development and implementation of Human Services programs to support vulnerable people in our community. This has included management and executive roles in areas such as Housing & Homelessness, Disability Services, Aged & Community Care, Veterans Health,  Child Safety, Domestic Violence, and most recently Rural Health. Jeff has undergraduate and post graduate qualifications in Business, Social Science, and Procurement but rates common sense above all else. Jeff has served on a number of boards and committees and hopes to make a contribution to the PACT Consumer Advisory Group. In his personal life Jeff shares a busy home with Dea-Ann, his wife of 27 years and their three wonderful adult (or almost) daughters. It is spending time in this setting that Jeff values above all else. His other interests include most sport but particularly cricket, rugby league and rugby which up until a few years ago he was still playing in the very social golden oldies league. These days he prefers to exercise by going for a walk or a quiet paddle in his kayak, as well as a boxing training regime.

Deborah McMillan

My name is Deb (Deborah) McMillan. I have been retired since 2012 after 40 years in the corporate environment. My main expertise was in team development and the establishment of new divisions within each corporate structure. I was born in London, a very polluted sick city. As a result throughout my life I have had many illnesses with intermittent outbreaks of good health. I have several autoimmune diseases including IBD. My PF was diagnosed 2012 but dismissed by my specialist. I have a keen interest in reading as much reputable data about lung diseases. My main sources of information include the Mayo Clinic, John Hopkins, International research papers, being part of forums with the American Lung Foundation, British Lung Foundation and European Lung Association plus the Lung Foundation Australia. The PACT advisory group is very much needed to emphasise the importance of management, treatment and perhaps a cure for IPF. Clinical trials with patients directly involved is essential. Now that COVID-19 rages the planet it is the perfect time, sadly, to make a difference and make people aware of the importance of addressing lung disease and, in particular, PF. We can, and will, make a difference in our quest to give patients the right diagnosis, treatment, support and above all hope for the future.

Bill Van Neirop

Bill Van Nierop is an Advocate for IPF and Lung Foundation Australia and is retired from business life living in Brisbane. Bill’s advocacy was a result of being diagnosed with Idiopathic Pulmonary Fibrosis in March 2015, and discovering almost immediately a significant lack of awareness of lung diseases and subsequent impact on patients within the community. Since 2015 Bill has completed three significant community projects to raise awareness of both IPF and lung disease, with the projects providing much needed funds for research and IPF patient support. Bill is an active member of several committees and groups, and is continuing to work in the background on projects that will improve life for those living with IPF, and fund vital research initiatives.

How you can get involved

Seeking people with pulmonary fibrosis and their caregivers to help guide pulmonary fibrosis research

The PACT Network is looking for consumer representatives (people living with pulmonary fibrosis and their caregivers) to join our PACT Consumer Advisory Group.

Members of the PACT Consumer Advisory Group provide feedback and advice to the PACT Steering Committee on issues or proposals that require, or would benefit from, consumer input. These may include, but are not limited to:

  • Priority areas for research in pulmonary fibrosis
  • Proposed clinical trials
  • Proposed research plans, or outcome measures to be used in research
  • Dissemination of information about current clinical trials and research findings
  • Governance of the PACT Network
  • Consumer participation in research.

What does membership of the PACT consumer advisory group involve?

The PACT Network Consumer Advisory Group will have up to 10 members, comprising people with pulmonary fibrosis and their caregivers. The work of the Consumer Advisory Group will be supported by the Centre for Research Excellence in Pulmonary Fibrosis and the PACT Network.

 

The PACT Network Consumer Advisory Group will meet three times per year, primarily by teleconference. Occasional face to face meetings may be held, with the option of attending by teleconference. Training on consumer engagement in research will be provided.

 

The role is voluntary but reasonable costs associated with attending meetings will be reimbursed. A sitting fee for meetings may be provided.

Successful applicants will be:

  • A person living with pulmonary fibrosis (any diagnosis)
    OR the caregiver for such a person
  • Able to commit to participating in 3 meetings per year, generally by teleconference
  • Able to represent a personal experience of living with pulmonary fibrosis, or caring for someone with pulmonary fibrosis
  • Interested in research
  • Able to communicate by email and on the telephone
  • Open to sharing their own knowledge and experience and hearing the views of others
  • Able to work collaboratively.

If you are interested in finding out more about the Centre for Research Excellence in Pulmonary Fibrosis, the PACT Network or this position, please contact:

Alison Hey-Cunningham

Centre of Research Excellence in Pulmonary Fibrosis

Email: alison.hey-cunningham@sydney.edu.au

Ph: 0418 615 976