Getting in CONTACT with Genetic Counselling Services

30 January 2019
Unfinished Business 2

Access to cancer genetic services remains a challenge for many Australians  – but a new research project will put patients in touch with world-leading genetics expertise with little more than the push of a button.

Called the CONTACT project, this pilot initiative aims to test the use of an online video conferencing tool for people who are potential carriers of cancer-causing familial genetic mutations. Led by TCRN members Professor Kathy Tucker and Rachel Williams at the SESLHD’s Hereditary Cancer Clinic (HCC), the pilot will focus on 50 patient and clinician participants at Prince of Wales Hospital in Randwick.

“We’ve been using telemedicine in a medical doctor model with our ACT genetics department, and that’s been working well for probably 20 years,” says Williams, a genetic counsellor and the Senior Clinical Network Lead for the HCC.

“What we’d like to do now that technology is moving in a newer direction is use a similar approach in a genetic counselling model.”

Currently, when a referral comes into the HCC, patients are triaged into one of two groups: those who are eligible for genetic testing, or those for whom further information is required to assess this. Patients who are automatically eligible for genetic testing based on blood test results or other health information generally attend an in-person appointment at the HCC, while those in the second group are typically offered an initial phone consultation.

The project will replace these in-person and telephone consults with a web conferencing option called PIXEP that enables group consultation sessions from multiple locations. This means that family members, genetic counsellors and – where necessary – medical staff can attend virtual consultations simultaneously, reducing the need for patients to travel for long distances in order to access critical health services.

In assessing the suitability of the telehealth model, researchers will be looking at the usability of the PIXEP technology and the acceptability of the telehealth model for both patients and clinicians, as well as its economic benefits. Patients will also be assessed at the start of the study for distress in relation to their condition and monitored throughout the pilot to ensure that their distress levels aren’t adversely impacted by the telehealth approach.

The pilot is expected to have a positive impact on patients from rural and remote areas who may not have access to genetic counselling services locally. Even for patients within Sydney, a telehealth approach can help patients attend appointments without having to tangle with challenging traffic, parking and public transport issues around the Randwick precinct.  

“It doesn’t matter where in the world the person is – they could be at their home, they could be at their work, they could be visiting their relatives in another state, and they can still attend the appointment,” Williams says.

“It’s about providing better access to care. I think one of the biggest wins will be for patients who want to bring other family members, friends or support people along to their appointments as well.”

The research team is also exploring opportunities to engage participants from CALD and Indigenous backgrounds – two demographics that have traditionally faced barriers to access for genetic counselling care. And, beyond health access issues, the project also speaks to the HCC’s remit as a preventative health service.

“We want to stop people getting cancers that can be prevented, so it will be good to see whether this tool will help us get the right information to relatives about their genetic risk,” Williams says.

The project is currently undergoing an ethics assessment, with a predicted start date of early 2019. If successful, the work will be expanded to St George, Canberra and Wollongong hospitals late next year.