Leonie Young

Breast cancer trials

How have you been involved in your clinical trials group?

The ANZ BCTG is the first collaborative cancer clinical trials group in Australia to establish a consumer advisory panel. I have been a member of the ANZBCTG Consumer Advisory Panel (CAP) since its inception in 1999 and was appointed the Chair in 2009.

The role of the ANZ BCTG CAP is to:

• provide a consumer perspective on relevant issues about clinical trials including recruitment, patient information for informed consent, new trial protocols and ethical issues;
• improve recruitment to breast cancer clinical trials;
• advocate for women who are participating in clinical trials;
• raise community awareness of breast cancer clinical trials and research; and
• represent consumer views on behalf of the ANZ BCTG to media, Government, community, consumer and research funding forums.

CAP members review and provide comment on clinical trial protocols and particularly patient information and consent documentation. All members of the ANZBCTG CAP have had a personal diagnosis of breast cancer. It is this experience which helps us provide an important perspective to ANZBCTG research programs as well as help improve clarity and identify potential issues for the researchers to consider.

I am also a member of the ANZBCTG Scientific Advisory Committee and consequently, I am considered a part of the team and have the opportunity to comment on and be a part of discussions relating to the planning and conduct of the ANZ BCTG research program.

What did you find rewarding?

I have had opportunities to expand my knowledge about breast cancer research and observe first hand how it is undertaken. One of the things I find most rewarding about this is I am considered part of a team working towards making a difference for women who have been affected by breast cancer. Although I am not a clinician, my opinion is valued because the perspective I share comes from a different aspect derived through my own breast cancer experience.

What advice or tips would you give somebody starting out?

It may feel a little intimidating at first being in an unfamiliar environment, trying to understand complex medical jargon and information. But if your attitude is built on mutual respect and collaboration and you are willing to listen and learn, then the rewards will be forthcoming. I can’t emphasise enough how important it is to be a team player whilst being passionate, professional and committed.