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Introducing "CancerStories” An Innovative Video Diary Programme Providing Peer Support Online Alex J Mitchell www.twitter.com/_alexjmitchell Consultant.

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Presentation on theme: "Introducing "CancerStories” An Innovative Video Diary Programme Providing Peer Support Online Alex J Mitchell www.twitter.com/_alexjmitchell Consultant."— Presentation transcript:

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? 1.Effective 2.Acceptable 3.Easily accessible (available) 4.Proven (evidence based) 5.Value for money

4 Ideal Treatment Conventional Psychosocial Rx. 1.EffectiveOften 2.Acceptablea little (40%) 3.Easily accessible (available)No 4.Proven (evidence based)mostly 5.Value for moneyprobably

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6 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 1000 Adv Cancer Patients in Denmark (Johnsen, 2013)

7 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

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11 Cancer Stories …power of online guided peer support

12 Overview of CancerStories!

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

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

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

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

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

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

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

20 Dissemination of CancerStories!

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23 Evaluation of CancerStories!

24 Evidence 1.Clinicians 2.Patients 3.Trial

25 NeverVery OftenSometimes 0 5 10 Would CS be useful in your clinic? 8

26 PoorOutstandingAverage 0 5 10 How would you rate CS overall? 9

27 Improvements to CancerStories

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

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


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