Welcome

Thank you for taking the time to complete our online survey and provide your feedback and input to the National Action Plan for Ovarian Cancer 2020-2025.
 
This is a refresh and expansion of the first Ovarian Cancer National Action Plan developed in 2015 and sets out the proposed priorities over the next five years in terms of research, investment, treatment, support and medical care for women with ovarian cancer (consumers).
 
To date the development of the plan has been based on detailed consultation with experts in the field.  Our focus now is to ensure that all women with ovarian cancer are at the heart of this 5-year plan. We welcome and value your feedback as a woman affected by ovarian cancer.

We ask you to draw on the experiences with ovarian cancer, regardless of where you are with your treatment. This will help us to find any trends in thoughts and opinions and allow us to go deeper into any problems.

Please note, there is no need to answer all questions.  You will have an opportunity to skip a question after question 4.

Question 1 : Seeks consent to have your feedback included in the plan
Questions 2 - 4 : Overall feedback on the plan
Question 5 - 6 : Expression of interest in ‘Think Tank’
Question 7 – 8 : Sector Collaboration, and Infrastructure and Investment
Questions 9 – 18 : Core Priority areas

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* 1. We are looking for your feedback to ensure that all women with ovarian cancer are at the heart of our plan. Your feedback will provide valuable insight to shape the plan and ensure that your voice is heard.  Where applicable, we would love to quote some of your thoughts and reflections in the document.  Please tick one box below to let us know if you are happy for us to quote your feedback or would prefer your feedback to remain anonymous.

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* 2. As outlined in the National Action Plan for Ovarian Cancer 2020-2025 Consumer Guide, the Plan identifies five core priorities:
  • Patient and family centred care and support
  • Understanding the disease and its causes
  • Prevention
  • Early detection
  • Diagnosis and treatment
It also discusses two important areas that will help enable progress within these core priorities  – sector collaboration, and sector infrastructure and investment. 

On a scale of 1 – 10, where 1 is poor, and 10 is excellent, from your perspective, how well do you think the plan captures the priority areas for investment?

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* 3. From your perspective, are the priority areas listed in question 2 the right areas of focus for our plan?  Is there anything missing?  Please provide comments.

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* 4. Of the priority areas identified in question 2, which are the areas you would most like to see progress in?  How has your personal experience with ovarian cancer guided your focus?

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* 5. Would you be interested in taking part in either a videoconference or face to face ‘think tank’ on our National Action Plan in early December? We are aiming to schedule these events for the week commencing 9 December.  To register your expression of interest, please provide your details below or contact us at ovariancancer@ovariancancer.net.au if you would like to participate.

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* 6. If you registered your interest for the 'think tank' at question 4, please provide the following information:

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* 7. Sector Collaboration. 
The Consumer Guide outlines a proposal to establish an Ovarian Cancer Alliance to strengthen national collaboration between government, researchers, clinicians, women with ovarian cancer and the industry, and to develop a widespread approach on how to improve outcomes for women with ovarian cancer.
What would you most like to see from this Alliance? 

From your perspective, where is greater collaboration most needed and why? 

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* 8. Sector infrastructure and investment
The Consumer Guide outlines the importance of investment in sector infrastructure and capacity that supports research and care options across multiple priority areas and organisations.  This shared infrastructure includes:
  • Best practice clinical service models and access
  • Tissue and cell bank resources
  • Expansion of the newly developed Clinical Quality Registry
Are there infrastructure and investment activities that you would like to see with regard to Ovarian Cancer? What are the most important areas to invest in, and where do we need more infrastructure in order to improve outcomes for women with ovarian cancer?

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* 9. Priority 1 - Patient and family centred care and support
The Consumer Guide identifies the following key action areas in relation to care and support for patients and their families:
  • Embedding optimal care pathways for all women with ovarian cancer
  • Ensuring women diagnosed with ovarian cancer are referred to a gynaecological oncologist surgeon
  • Providing easy access to gynaecological (and ovarian) cancer nurses.
  • Establishing and promoting gynaecological cancer centres of excellence across Australia.
  • Establishing survivorship clinics and quality of life support pathways for women during and after treatment.
  • Developing and supporting an active community of women with ovarian cancer.
  • Developing support systems to meet the social and emotional needs of carers, family and friends of women with ovarian cancer.
  • Creating a central database for women with ovarian cancer and those close to them to include up to date information relating to all aspects of ovarian cancer.
On a scale of 1 – 10, where 1 is poor, and 10 is excellent, how satisfied are you that we have captured the key actions required in the area of 'Patient and family centred care and support'?

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* 10. Based on your experience with ovarian cancer, are there actions within the area of 'Patient and family centred care and support' that are missing? Of those listed above, what would you most like to see progressed and why?

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* 11. Priority 2 - Understanding the disease and its causes
The Consumer Guide outlines the following key research areas in relation to ovarian cancer and its causes:
  • classifying tissue specimens to help discover and support new curative treatments
  • finding out more about how rare, and other subtypes of ovarian cancer develop and express themselves
  • exploring why some women become resistant to certain chemotherapy drugs
  • the role of genetics in the causes, incidence and hereditary factors of ovarian cancer.
On a scale of 1 – 10, where 1 is poor, and 10 is excellent, how satisfied are you that we have captured the key actions required in the area of 'Understanding the disease and its causes'?

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* 12. Based on your experience with ovarian cancer, are there actions within the area of 'Understanding the disease and its causes' that are missing? Of those listed above, what would you most like to see progressed and why?

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* 13. Priority 3 - Preventing ovarian cancer from starting
The Consumer Guide outlines the following priority actions in relation to prevention of ovarian cancer:
  • Target education and awareness campaigns to reach all women (and men) at risk, including minority groups.
  • Continue to research and educate the public about those risk factors we know we can control.
  • Invest in research into genetic testing to help decrease the risk for women at high risk.
  • Develop better ways for predicting risk of ovarian cancer in women carrying a high-risk gene fault.
  • Provide better information about preventative (prophylactic) surgery, support and treatment pathways for these women.
  • Ensure all women who are thinking about, or have preventative surgery, can access a menopause clinic prior to their surgery.
On a scale of 1 – 10, where 1 is poor, and 10 is excellent, how satisfied are you that we have captured the key actions required in the area of 'Preventing ovarian cancer from starting'?

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* 14. Based on your experience with ovarian cancer, are there actions within the area of 'Preventing ovarian cancer from starting' that are missing? Of those listed above, what would you most like to see progressed and why?

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* 15. Priority 4 - Finding ovarian cancer early
The Consumer Guide outlines the following priorities in relation to finding ovarian cancer early:
  • Prioritise research into finding tumour markers to help screen and diagnose ovarian cancer subtypes, guide treatment and monitor cancer recurrence.
  • Encourage and improve access to genetic testing for women who are at high risk of developing ovarian cancer.
On a scale of 1 – 10, where 1 is poor, and 10 is excellent, how satisfied are you that we have captured the key actions required in the area of 'Finding ovarian cancer early'?

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* 16. Based on your experience with ovarian cancer, are there actions within the area of 'Finding ovarian cancer early' that are missing? Of those listed above, what would you most like to see progressed and why?

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* 17. Priority 5 - Diagnosis and Treatment
The Consumer Guide outlines the following priorities in relation to diagnosis and treatment:
  • Improve timely diagnosis by enhancing health professional’s awareness to recognise the signs and symptoms of ovarian cancer are vague, but persistent.  Early investigation is essential (follow optimal care pathway.)
  • Promote genetic risk assessment and testing for all women with ovarian cancer.
  • Strengthen clinical trials and improve consumers access to and awareness about how clinical trials work.
  • Support and invest in clinical trials through existing stakeholders and cancer centres.
  • Position Australia as an international leader in carrying out research and conducting ovarian cancer trials.
  • Continue to explore ways to improve treatment pathways for every woman with ovarian cancer.
  • Further research to find new drugs, different ways of giving chemotherapy, as well as gain a better understanding of drug resistance.
  • Ensure all women have access to gynae-oncologists in the field of ovarian cancer surgery.
  • Further research into surgical treatment options, looking at survival.
  • Improve our understanding of women’s responses to existing treatments and why differences exist in clinical outcomes.
  • Embed the optimal care pathway for women with ovarian cancer into all aspects of ovarian cancer medical care.
On a scale of 1 – 10, where 1 is poor, and 10 is excellent, how satisfied are you that we have captured the key actions required in the area of 'Diagnosis and Treatment'?

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* 18. Based on your experience with ovarian cancer, are there actions within the area of 'Diagnosis and Treatment' that are missing? Of those listed above, what would you most like to see progressed and why?

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