Pushing the possibilities: Consumers and health professionals co-design web videos on breast cancer

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1 Pushing the possibilities: Consumers and health professionals co-design web videos on breast cancer Chris Walsh (Deputy Chair) Rowena Mortimer (Secretary) Jenny Williams (Committee Member) National Psycho Social Oncology Conference th November, Hamilton, New Zealand

2 Overview of presentation Chris Jenny Rowena Positioning of the web videos, production, themes and conclusion Why she got involved, her own cancer, being inclusive about breast cancer and young women's issues What these videos offer for models of consumer involvement and shaking up the seemingly unshakeable

3 Breast Cancer Aotearoa Coalition A united voice for NZ women who have experienced breast cancer, to make world class detection, treatment and care accessible Information, support and representation empowering those with breast cancer to make informed decisions about their treatment and care

4 BCAC committee members

5 BCAC aim: To research and promote the provision of psychosocial services for breast cancer patients & their family/whanau Psycho Social Oncology conference theme of Multidisciplinary teams reported on the Cancer Care Survey (2009): Areas for improvement: Provision of emotional support, information related to living and consideration of the patients circumstances in planning treatment Service quality recommendations: The survey results be used and debated by health care professionals, e.g. who in the MDT team (doctor, nurse, allied health or Cancer Society staff) is best placed to respond to the supportive care gap?

6 The BCAC web videos Each video covers a different aspect of breast cancer Women & men who have had breast cancer, partners, family members, treatment team members discuss aspects of their experience of the disease Provides accessible support and information Demystifies & normalises the experience so those diagnosed feel less isolated

7 Process of producing the web videos : Behind the scenes Pre-production Production Post production Launch

8 Video themes from interviews in order of number of views Diagnosis Risk Surgery Reactions Life after Getting through Radiation Chemotherapy Reconstruction Family support Relationships Hormone therapy Secondary Clinical trials

9 Jenny Why I participated Inflammatory Breast Cancer Rare: 1-5% of all breast cancer One of the most aggressive forms of breast cancer No lump, different symptoms

10 Jenny - Why I participated Secondary breast cancer, metastatic Despite advances in treatments, some people with aggressive breast cancer will still go on to get secondary cancer Approximately 620 women die of breast cancer each year Their stories need to be told

11 Jenny - Why I participated Inclusiveness Impact of treatment Emotional impact on both individual and family

12 Inclusiveness - Men Men can get breast cancer too With family history, Brian knew what to look for and recognised the lump as breast cancer

13 Young women Young women face some different challenges with breast cancer: Body image Fertility Young families

14 The web video series Is a collaboration between BCAC and health professionals Provides an invaluable resource for women and men affected by breast cancer in their own surroundings Provides support to patients without cost Provides support for patients and their families in their own time and as many times as they want

15 Platform and principles for consumer participation Cancer Control Strategy Goal 5 objective 3: Ensure active involvement of consumer representatives across the spectrum of cancer control Value of including cancer consumers in the planning, delivery and evaluation of services is proven

16 Platform and principles The Guidance for Improving Supportive Care for Adults with Cancer in New Zealand Person centered approach Principle of actively involving consumers and communities Consumers ARE to be involved in the planning delivery and evaluation of cancer services to adults

17 Consumer involvement or not? Regional Cancer Networks Cancer Steering Groups situation in northern region DHBs Cancer Control Council Cancer Society Cancer consumer groups such as Breast Cancer Aotearoa Coalition

18 Problem areas Aversion to involving cancer consumers Reluctance of cancer patients to look back No commitment by Cancer Control New Zealand to the involvement of cancer consumers No evaluation by cancer consumer groups Cancer consumers a minority voice on committees and not listened to

19 Shaking up the seemingly unshakeable Cancer Control New Zealand must include a Board Member who is a cancer consumer and who represents cancer consumers at all times, consults and takes their point of view forward All terms of reference for all groups, committees and Boards concerned with cancer MUST include cancer consumer representation Training should be given to health professionals and DHB administrators on how to: encourage patients to represent others hear and act on their input

20 Breast Cancer Aotearoa Coalition Patients must be encouraged and supported to become advocates for others Patients must be encouraged to share their views on cancer care from their own experience on committees with other consumers Enablers to consumer participation such as appropriately supported training should be adequately resourced

21 We all see the world differently

22 We believe The web videos are an example of how cancer consumers and health professionals can work together for the benefit of future patients Words in strategies, reports and guidelines are hollow unless they translate into meaningful, timely consumer participation and collaboration

23 Conclusion From web videos After treatment there s suddenly another phase of what s next? Danute Leathem Psychologist

24 Life after breast cancer Mereheeni Hooker Diagnosed with HER2 positive breast cancer Has a bucket list that may not be very long but told her husband it could be very expensive

25 Thank you We thank all those who gave so generously their time and wisdom to share their journey so others can be inspired Kia kaha Be strong

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