Partnerships and collaboration

EMPOWER-SMS is a consumer co-designed text message program that supports health and wellness of people recovering from breast cancer treatment, and links them to helpful health information and free services via weblinks.

EMPOWER-SMS has been tested in a clinical trial with 160 women with early-stage breast cancer to see how the program impacted women’s health outcomes compared to not receiving text messages (‘usual care’). EMPOWER-SMS was also tested by 844 breast cancer survivors (women and men) during the COVID-19 lockdowns. In both studies, participants provided feedback about if EMPOWER-SMS was useful and acceptable.

The next clinical trial called EMPOWER-SMS GP RCT will test how this program can be integrated into usual care at GP clinics across Australia. It will also evaluate if the program improves health outcomes and is useful and acceptable for breast cancer survivors. If the study is successful, there are plans for a national roll out.

Co-designing EMPOWER-SMS with end-users was critical, because their opinions can be different to health professionals and researchers.

The clinical trial found that the women who received EMPOWER-SMS missed less doses of endocrine therapy (anti-hormone) tablets compared to women who received ‘usual care’, and 91% found EMPOWER-SMS useful.

The COVID-19 study saw 844 diverse people sign up, from 30-87 years old, regional/rural/remote communities (32%) and socioeconomically disadvantaged areas (30%).

Feedback from 488 people showed EMPOWER-SMS:

• was easy-to-understand (99%)
• was supportive (87%)
• motivated exercise (70%)
• motivated healthy eating (69%).

EMPOWER-SMS-GP RCT is funded by the World Cancer Research Fund and will start recruitment soon.

BCNA consumer representative Christine Mitchell and other breast cancer survivors have been on the research team since 2018; from co-designing EMPOWER-SMS to sharing the study results.

The EMPOWER-SMS trial won the 2022 Australian Clinical Trials Alliance Consumer Involvement Award and the consumer co-designed video won the 2020 Universities Australia "Pitch It Clever" People’s Choice Award.

The Out with Cancer Study examined the cancer survivorship and care experiences of lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) people, a population described as a “growing and medically underserved population” in cancer care.

LGBTQI communities experience a disproportionate cancer burden and face unique psychosocial challenges. The American Society of Clinical Oncology recognised this health disparity and concluded there is "insufficient knowledge about the health care needs, outcomes, lived experiences and effective interventions to improve outcomes" for LGBTQI populations. As a result, health care providers and policy makers are ill-equipped to provide culturally-safe advice or assistance to LGBTQI cancer survivors and their families.

The Out with Cancer Study addressed these gaps in knowledge through surveys and interviews with LGBTQI people who had been diagnosed with cancer, their informal caregivers, and health care professionals. We also conducted an audit of Australian cancer information resources to assess their LGBTQI-inclusivity and appropriateness.

The four-year study was funded by an Australian Research Council linkage grant, in partnership with BCNA, Cancer Council NSW, PCFA, Canteen, ACON and LGBTIQ+ Health Australia.

LGBTQI people with cancer reported rates of distress 3 to 6 times higher than the general cancer population.  Higher rates of distress and lower quality of life were reported by transgender people, LGBTQI adolescents and young adults, those who identify as bisexual or queer and those in rural or regional areas. Distress as associated with discrimination in life and in cancer care, anxiety about identity disclosure, lack of social support, physical and sexual concerns, and impact of cancer on gender and LGBTQI identities.

Health care professionals reported lack of knowledge and confidence in treating LGBTQI patients, and wanted more training and education. Only 13% of online cancer information resources mention LGBTQI people.

The Out With Cancer Study findings have been used to inform information pages for BCNA, My Journey and the Cancer Council NSW resource LGBTQI+ People and Cancer: A guide for people with cancer, their families and friends.

Training materials for health care professionals, including policy and practice guidelines, are currently being evaluated, in collaboration with consumers.

LGBTQI+ consumer representatives, including BCNA consumers, were involved throughout all stages of this study, including in the study design, development of study materials, recruitment, coding and analysis of data, and dissemination of findings.

The consumers were engaged as part of a 46-member stakeholder advisory group comprising cancer healthcare professionals, representatives from LGBTQI health and cancer support organisations and academics.

BCNA consumers took part in an online LOTL interview with study lead Professor Jane Ussher, to discuss LGBTQI cancer survivorship.