Cancer Voices highlights news, events and information we think may be of interest to our members.
Closing the gap for indigenous Australians affected by cancer – Excerpts from this webinar sponsored by Adelaide’s SAHMRI and Australian Bragg Centre for Proton Therapy, presented by Julie McCrossin :-
Children and adolescents – videos of some great Australian innovations and settings for treating children and adolescents. A series of webinars sponsored by Adelaide’s SAHMRI and Australian Bragg Centre for Proton Therapy, presented by Julie McCrossin :-
Proton therapy webinars/podcasts – the incredible Julie McCrossin presents a series of engaging and informative webinars, skillfully combining personal, clinical, scientific, health service perspectives. Learn something new every time. Thursday 13 May 2021 – Proton Therapy: Part 1, Thursday 20 May 2021 – Proton Therapy: Part 2, Thursday 3 June 2021 – Children, Adolescents & Young Adults, Thursday 10 June 2021 – First Nations’ People. Register for the webinars (posted 21 may 2021)
Online Survey: Bowel cancer survivors’ work participation
-the impact of a bowel cancer diagnosis and treatment side-effects on returning to work. Information, flyer, survey: https://redcap.sswahs.nsw.gov.au/surveys/?s=YWYKJYX9XT
Online Survey – Exploring how the experiences of adult children of cancer survivors are associated with wellbeing. (Researchers at Monash University’s School of Psychological Sciences)
You can take part if a) you were aged 18 years or older when your parent was diagnosed with cancer, b) your parent was diagnosed with their cancer at least 12 months ago, c) your parent is a cancer survivor, d) your parent completed their cancer treatment sometime between 2016 and today, e) you are an Australian citizen or resident and f) you can read and complete a survey in English. To complete the 10-15 minute anonymous survey follow the link https://monash.az1.qualtrics.com/jfe/form/SV_4ZQcssKt6voUuLX
Feel free to share with others who meet the research criteria to encourage contribution to this valuable study. For more information about the study and how to enter the draw, please see the above link or email firstname.lastname@example.org. Complete the survey to enter the draw to win a $50 Coles Online gift card
Interviews: Seeking cancer patients/carers/family views or experience of Advance Care Planning.
Advance care planning is the process through which individuals make plans for their future care, often through discussions with doctors, family members and important others. These plans are intended to guide medical care and decision-making if the individual loses the ability to make, or communicate, their wishes. Advance care planning has many benefits, offering people some control over their healthcare options and improving the quality of the end-of-life care they receive.
In this study, we are investigating what could and should be done to ensure that Advance care planning is meeting the needs and preferences of Australian patients from a range of cultural backgrounds, and those living with chronic disease.
Seeking to interview a person with cancer, or just their carer, or both, to talk about Advance Care Planning – what they know, think, feel about them, their experiences with this (whether they have or haven’t formalised via documentation), and what might help them in, and barriers there might be to, completing them. We can provide a voucher for $50 as reimbursement for persons who have had a diagnosis of cancer, or for those who are family or carers of such persons.
Seeking BOWEL CANCER survivors views (online survey &/or interview)
CARE AFTER COLORECTAL CANCER TREATMENT, WE WOULD LIKE TO HEAR ABOUT YOUR EXPERIENCE
Researchers at the University of Sydney are inviting you to participate in a study that seeks to explore individuals’ experiences of care after colorectal cancer treatment. Who can take part? · Adults (≥18 years) who have completed primary (first-line) treatment for colorectal cancer.
What does the study involve?
There are two parts to the study: an online survey and/or an interview. You are invited to participate in one or both parts as you wish. The online survey can be accessed by clicking the link below: (If the link does not work, try copying the link into your web browser)
The survey will take about 20-30 minutes to complete. The interview can be face-to-face or by telephone and will take about 30 – 40 minutes. If you have any questions or would like to know more, please contact the study researcher, Bora Kim: email: email@example.com or phone: 02 8627 1523. (survey open May-July 2021)
Health Consumer Advocacy Network of South Australia (Health CAN SA) is inviting health consumers to join this new network health consumers who believe the people, who provides an independent health consumer voice in South Australia to inform government, service providers and policy makers about the experiences, issues and concerns of health consumers and contribute to shared planning and problem solving. Contact Allison Willis firstname.lastname@example.org for info and Expression of Interest Form.
Cancer Council NSW Survivorship eNews May 2021 – exercise, webinars, online programs, podcasts – Cancer and exercise webinar (17th Jun 21) – register; Calming podcasts;’The thing about advanced cancer’ – podcast interviews; CanCope 8 wks online program, after treatment finishes; iConquerFear – after breast cancer if you worry the cancer may come back
Enabling Secondary use of data from clinical trials – consultation workshops & survey. June 16-22, 2021
The Health Studies Australian National Data Asset (HeSANDA) initiative aims to build a national collection of data generated through Australian health research and support appropriate and ethical sharing of the data with other Australian researchers. By supporting secondary use of data from health research, HeSANDA aims to stimulate new research ideas, increase the impact of health research, increase the benefits of investment in health research, and ultimately improve the health and wellbeing of people in Australia.
As a first step, the initiative is focusing on data and information collected from investigator-initiated clinical trials.
We are inviting people who are involved in clinical trials research in Australia to attend a 90-minute virtual consultation workshop to provide views on how a national data asset could be designed, built, and implemented in Australia.
We are interested in hearing from: 1) researchers involved in the design and/or conduct of clinical trials 2) people who work for a clinical trials / research organisation 3) consumers (patients, carers or people who use healthcare services) who are or have been involved in the design and/or conduct of clinical trials 4) clinical trial participants (people who have taken part in, are taking part in or are considering taking part in a clinical trial).
Be informed before providing feedback
We ask that everyone providing feedback through the consultation process reads the attached background paper. A webinar was held on Tuesday 8 June. It is important to watch this before attending the consultation as it will give the background and context of this consultation how it fits into the bigger HeSANDA project which began in 2018.
Webinar link here https://youtu.be/9zd4GufgFjk
Have your say
1. Attend a 90-minute virtual consultation workshop in June. We are running 4 sessions; two will focus mainly on issues for consumers / trial participants and two will focus mainly on issues for researchers. Choose from one the the following sessions. Register Here.
Consumers / Research Participants 16th June from 2.00 pm to 3:30 pm (AEST) 21st June 11:00 – 12:30 pm (AEST) Researchers / clinical trial organisations 17th June 4:30 – 6:00pm (AEST) 22nd June 5:00 – 6:30pm (AEST)
Workshop numbers are limited so please register if interested.
Consumers and Research Participants who join the consultation will be reimbursed for your contribution. ACTA will discuss the details with you further after your EOI has been received.
2. Complete the online survey
Output Information from the consultation process will inform the next stage of planning for the HeSANDA initiative. For more information, see the background paper.
Colorectal Cancer Screening Starting at Age 45 Years—Ensuring Benefits Are Realized by All (new USA policy – not in Australia) Shivan J. Mehta, MD, MBA, MSHP; Arden M. Morris, MD, MPH; Sonia S. Kupfer, MD JAMA Network Open Editorial, 20 May 2021
Watch this space for more news updates and opportunities to participate in cancer related webinars, surveys, focus groups etc.