Fizz Thompson, Clinical and Operations Director presentation on "utilising patient stories", presented at IOF Athens.

1. Utilising patient Stories
Fizz Thompson
Clinical and Operations Director
11 September 2015

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Getting patient Stories
• We wanted to know about real people and real lives
• Commissioned a land mark report – Life with
Osteoporosis
• Reveals in great depth the impact of osteoporosis
on peoples lives
• Provides individual case studies in their worlds

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Why we did the study
What we achieved as a team effort
How we can use the results
Life with Osteoporosis

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Why? … We need to break the silence

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1. To promote osteoporosis and the need
for change among the general public,
politicians and healthcare professionals
2. To give us a detailed insight into life
with the condition to help us develop the
support we provide
Why?

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What we achieved
Report &
videos – all
on our
website

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• 3,228 people completed the survey
• 27 people had a face to face interview
• 25 people kept an online diary for a week
What we achieved

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What we found

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What we heard
I never used to worry about walking my dog
over the fields or when it snowed. Now I worry
if I trip or fall, will I break another bone?
I’m unable to visit family.
I have to depend on them
to visit me, as I cannot
travel for any length of
time.
I always have to be on guard
about people hugging me
too strongly – one time my
husband hugged me tightly I
broke a rib.
I can’t lift anything of any weight, so
hoovering or carrying shopping becomes a
problem. Even washing my hair becomes
trickier if I need to bend over!

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What People said

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1. To raise awareness using press and social media
2. To call for better services with policy-makers
and politicians
3. To improve care through health professional
education
4. To inspire people to help fund the charity’s
work with donors, trust applications, appeals etc
Here are some ways we use it externally…

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Developing our work …

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• We now need to ask ‘how do people with
osteoporosis want to be supported?’
• Our plans:
• Life with Osteoporosis II Survey in Sep 2015
• Interviews or focus groups in Autumn 2015
• Shape ideas & test options in 2016
• Identify new areas for further review and
research
Developing our work…

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