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Introducing " CancerStories ” An Innovative Video Diary Programme Providing Peer Support Online

Introducing " CancerStories ” An Innovative Video Diary Programme Providing Peer Support Online. Alex J Mitchell www.twitter.com/_alexjmitchell Consultant in Psycho-oncology and Hon SnR University Hospitals Leicester. We are currently looking for Evaluators (who help rate)

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Introducing " CancerStories ” An Innovative Video Diary Programme Providing Peer Support Online

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  1. Introducing "CancerStories” An Innovative Video Diary Programme Providing Peer Support Online Alex J Mitchell www.twitter.com/_alexjmitchell Consultant in Psycho-oncology and Hon SnR University Hospitals Leicester

  2. We are currently looking for Evaluators (who help rate) Partners (who help distribute) Co-developers (who help expand) To help us develop and improve cancerstories

  3. What is Ideal Treatment? • Effective • Acceptable • Easily accessible (available) • Proven (evidence based) • Value for money

  4. Ideal Treatment • Conventional • Psychosocial Rx. • Effective Often • Acceptable a little (40%) • Easily accessible (available) No • Proven (evidence based) mostly • Value for money probably

  5. 1000 Adv Cancer Patients in Denmark (Johnsen, 2013) Johnsen Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems Psychooncology. 2012

  6. Is it time for a Treatment Revolution? 70% with distress do not receive timely psychosocial treatment 60% do not want a classical psychosocial intervention Provision of services is patchy Community support often unavailable

  7. Cancer Stories …power of online guided peer support

  8. Overview of CancerStories!

  9. CancerStories is a collection of true life accounts of how real people coped with cancer Hugh, Prostate Ca

  10. CancerStories is about the person’s own account, what is meaningful to them, how they coped Virginia, Lung Ca

  11. All patients have kindly given their consent to record their account for the benefit of future patients Sue, Breast Ca

  12. Patients are interviewed in an informal but professional style and asked to give an honest but informative account about their cancer journey Tom, Osteosarcoma

  13. Accounts are between 30- 60mins, enough time to tell others what is really important Louisa, Breast Ca

  14. Patients can share their own accounts with family and friends before deciding to share with the wider community John, Prostate Ca

  15. Each account is evaluated by a panel of clinicians and also by other patients Rupen, Lymphoma

  16. Dissemination of CancerStories!

  17. Evaluation of CancerStories!

  18. Evidence • Clinicians • Patients • Trial

  19. Would CS be useful in your clinic? Never Sometimes Very Often 5 10 0 8

  20. How would you rate CS overall? Poor Average Outstanding 5 10 0 9

  21. Improvements to CancerStories

  22. Improvements to CancerStories Pain Fatigue Distress Depression Anxiety Weight/eating Sleeping Families Work Caregivers Communication Complementary rx We are multiple developing 5 minute themes

  23. Thanks to the patients of CancerStories! Want to help? Get in touch Coping.with.cancer.uk@gmail.com

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