Title: Introducing "CancerStories
1Introducing "CancerStories An Innovative Video
Diary Programme Providing Peer Support Online
Alex J Mitchell www.twitter.com/_alexjmitchell Co
nsultant in Psycho-oncology and Hon
SnR University Hospitals Leicester
2We are currently looking for Evaluators (who
help rate) Partners (who help
distribute) Co-developers (who help expand) To
help us develop and improve cancerstories
3What is Ideal Treatment?
-
- Effective
- Acceptable
- Easily accessible (available)
- Proven (evidence based)
- Value for money
4Ideal Treatment
- Conventional
- Psychosocial Rx.
- Effective Often
- Acceptable a little (40)
- Easily accessible (available) No
- Proven (evidence based) mostly
- Value for money probably
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61000 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
7Is 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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11Cancer Stories
power of online guided peer support
12Overview of CancerStories!
13CancerStories is a collection of true life
accounts of how real people coped with cancer
Hugh, Prostate Ca
14CancerStories is about the persons own
account, what is meaningful to them,
how they coped
Virginia, Lung Ca
15All patients have kindly given their consent to
record their account for the benefit of future
patients
Sue, Breast Ca
16Patients are interviewed in an informal but
professional style and asked to give an
honest but informative account about their
cancer journey
Tom, Osteosarcoma
17Accounts are between 30- 60mins, enough time to
tell others what is really important
Louisa, Breast Ca
18Patients can share their own accounts with
family and friends before deciding to
share with the wider community
John, Prostate Ca
19Each account is evaluated by a panel of
clinicians and also by other patients
Rupen, Lymphoma
20Dissemination of CancerStories!
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23 Evaluation of CancerStories!
24Evidence
-
- Clinicians
- Patients
- Trial
25Would CS be useful in your clinic?
Never
Very Often
Sometimes
5
10
0
8
26How would you rate CS overall?
Poor
Outstanding
Average
5
10
0
9
27Improvements to CancerStories
28Improvements to CancerStories
Pain Fatigue Distress Depression Anxiety Weight/ea
ting Sleeping Families Work Caregivers Communicati
on Complementary rx
We are multiple developing 5 minute themes
29Thanks to the patients of CancerStories!
Want to help? Get in touch Coping.with.cancer.uk_at_g
mail.com