Utilising patient Stories

Fizz ThompsonClinical 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 heardI 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 media2. To call for better services with policy-makers

and politicians3. 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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