specialty focus looking at the drivers of research and where the community sits within the research process .
I returned to Australia to work at the community level with a focus on oncology , particularly rare disease , and then in 2012 started a charity called the Centre for Community-Driven Research ( CCDR ). Throughout my career I had seen that there was a gap between what patients were talking about at ‘ the bedside ’, and the way decisions were made at the policy level . So CCDR was a way to give patients a platform to talk about their experience and provide their recommendations so that we can turn this into evidence to support decision-making .
From the research we could see that patients needed more access to specialist advice and support , and that ’ s why the Patient Pathways program was developed . We started by testing a central telehealth case manager service for pancreatic cancer patients which is a rare cancer . At the time , patients really didn ’ t have a support organisation to turn to so I enlisted a friend – Josie Keneally – who I went to ACU with to work on the program with me .
Then in 2019 , Greg Hunt , Minister for Health , announced funding for the program to be expanded to test it in another 10 disease areas . We ’ ve just done the first program evaluation and are waiting to hear whether there will be continuation of funding . In 2018 , we also expanded CCDR into a global public health initiative with offices in the UK and Switzerland . The pandemic slowed us down a bit but this year we ’ ve opened up operations in 19 countries .
Tell us about your work . If I could sum up my work , I think I would say it is a non-stop process of solving puzzles . My role as a telehealth nurse in rare , genetic and complex disease certainly keeps me on my toes . The patients and families that come into the telehealth clinic are all completely different and there isn ’ t a ‘ one size fits all ’ fix for any of them . A lot of the consultation is spent on education , explaining their condition and also explaining how the health system works .
Often patients come to us and haven ’ t had a proper full medical history taken , so I ’ ll often do that with them as well . The nurse intervention side of things varies but tends to focus on symptom management and tracking , and making sure patients are referred back into the health system . We also make sure patients understand clinical trials and where appropriate , talk about participation in trials . I think the thing patients are most appreciative of is the time that we can give them . Telehealth feels less rushed than a face-to-face clinic and people tend to be more relaxed .
The research side of things is also a big puzzle . We have a great research team and my sister , Anne Holliday , looks after the quantitative team while I look after the qualitative team . For the qualitative side of our research we interview patients and then code their transcripts line by line , so literally looking for clues on what their experience has been like and what we need to do better in the future within the health system .
The last piece of the puzzle is being a CEO and figuring out funding and managing all of the governance
“ Wherever there is a committee or panel making decisions about health , there needs to be a nurse at that table .
requirements . That somehow gets fit in between the telehealth clinic and research .
How have you seen the role of the nurse evolve over your career ? Evolve yes , but the core values that drive nursing of protecting human dignity and advocating for our patients remain stable . It ’ s a hard question because you want to be positive and say it has evolved , but there are still a lot of misconceptions about what it is that a nurse does and until we clear that up in the community and with decision-makers , it will always be a challenge to find our place at the table .
Going into this year and the future what do you see as important areas for the profession ? It ’ s going to be important to recognise nurses as leaders and make space for nurses in decision-making roles . If we aren ’ t able to recognise nurse as leaders and have that representation , it ’ s going to be hard to ensure for example that we have a sustainable workforce and that nurses are protected in their workplace . Wherever there is a committee or panel making decisions about health , there needs to be a nurse at that table , not only as health professionals but as patient advocates . ■
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