Thanks for your comments and feedback on the My Journey online tool. We understand that online resources are not for everybody, and that is why we have updated the hard copy My Journey Information Guide and our updated printed resource for metastatic patients (Hope & Hurdles) is currently at the printers. We are committed to continue to make these available free of charge.
We are an organisation that wants to ensure we provide the services people need in the way they need them - so our measure of support and reach is not just through our tool or hard copy resources.
We know that many Australians need to speak to us on the phone, watch webcasts, listen to podcasts, interact on this online tool or hear about their breast cancer in their own language. So I hope you have seen the increase in the way we offer information and support.
The way health care is delivered in the future will change, with more telehealth and other online services. BCNA has to keep up with the times and moving to digital is the way of the world. We have been at the forefront of the move to digital and we will continue to invest in this area. We are in a transition there is no question about that and the tool is not perfect and everyday we are adding to it in an effort to respond to our networks feedback.
As you point out their are many advantages of the online tool, particularly keeping the information up to date.
Through the tool we have been able to provide people with up-to-date information on coronavirus, its potential impact on people being treated for breast cancer, and how to look after yourself when you are immuno-compromised. We have had more than 10,000 people coming to us for their trusted and most up to date information. We are very proud that we are able to update it every day if required to reflect the changes around Australia.
We knew when we developed the online tool that it would take a while to build the reach up to more than 80% of people newly diagnosed. We are working closely with health professionals, especially breast care nurses, to encourage them to sign women up to the tool. The current split of online to hard copy resources is 60% choosing online and 40% choosing hard copy - so we certainly feel proud.
The big benefit of the online tool over the hard copy guide is that we can provide information tailored to a woman or man's particular type of breast cancer and the stage of their experience – newly diagnosed, about to begin a particular type of treatment, in follow-up care etc. It also means that we can support women and men diagnosed on the day of diagnosis - ensuring they can make the very best decisions for them and their personal situation.
For those of you have who have found the tool not very user friendly - we are SUPER keen to speak with you - the tool is an enormous investment and I know the team have responded to feedback. For example we were receiving feedback that the network wanted a search function so we have now invested in that. We also have many many plans to make the tool more interactive and helpful.
BCNA is an organisation led by those who have experienced breast cancer and while the online network is here for you to connect and ask each other for advice - I would really welcome people to connect directly with me and the team on any of our services to help make improvements all the time.
With regards to the term ‘journey’, it is one we have struggled with too. We know it doesn’t resonate with everyone and its use has significantly changed since the My Journey Kit was first launched in 2005. However we haven’t been able to come up with something that most people can relate too - but I am totally up for hearing new suggestions. We have the same discussions around survivors!
@TonyaM I have asked the team to follow up with you on your requests - I am sorry you have not been able to receive the hard copy.
Thanks again for your feedback. It is only through feedback like yours that we can continue to improve our products and services so please call us directly to provide it to us - we are totally up for it.
