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
Partners
Co-developers
(who help rate)
(who help distribute)
(who help expand)
To help us develop and improve
cancerstories
What is Ideal Treatment?
1. Effective
2. Acceptable
3. Easily accessible (available)
4. Proven (evidence based)
5. Value for money
Ideal Treatment
Conventional
Psychosocial Rx.
1. Effective
Often
2. Acceptable
a little (40%)
3. Easily accessible (available)
No
4. Proven (evidence based)
mostly
5. Value for money
probably
1000 Adv Cancer Patients in Denmark
(Johnsen, 2013)
90%
80%
Had Problem
Helped
70%
Adequate Help
60%
50%
40%
30%
20%
10%
Se
xu
al
ity
on
ce
nt
ra
tio
n
C
Fa
m
ily
an
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fri
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ds
W
or
ry
Fa
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ue
iv
iti
es
Ph
ys
ic
al
ac
t
ai
ly
ac
tiv
iti
es
on
W
or
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d
D
ep
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e
fa
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La
ck
o
oe
a
D
ys
pn
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se
a
N
Pa
in
0%
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
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
Cancer Stories
…power of online guided peer support
Overview of CancerStories!
CancerStories is a
collection of true life
accounts of how real
people coped with
cancer
Hugh, Prostate Ca
CancerStories is about the
person’s own account,
what is meaningful to
them, how they coped
Virginia, Lung Ca
All patients have kindly given
their consent to record their
account for the benefit of
future patients
Sue, Breast Ca
Patients are interviewed in an
informal but professional style
and asked to give an
honest but informative
account about their cancer
journey
Tom, Osteosarcoma
Accounts are between 3060mins, enough time to tell
others what is really
important
Louisa, Breast Ca
Patients can share their own
accounts with family and
friends before deciding to
share with the wider
community
John, Prostate Ca
Each account is evaluated by a
panel of clinicians and also by
other patients
Rupen, Lymphoma
Dissemination of CancerStories!
Evaluation of CancerStories!
Evidence
1. Clinicians
2. Patients
3. Trial
Would CS be useful in your clinic?
Never
0
Sometimes
Very Often
5
10
8
How would you rate CS overall?
Poor
0
Average
Outstanding
5
10
9
Improvements to CancerStories
Improvements to CancerStories
Pain
We are multiple
Fatigue
developing 5 minute themes
Distress
Depression
Anxiety
Weight/eating
Sleeping
Families
Work
Caregivers
Communication
Complementary rx
Thanks to the patients of
CancerStories!
Want to help? Get in touch
Coping.with.cancer.uk@gmail.com