How to manage a patient group Findacure Workshop, Friday 12 September - - PowerPoint PPT Presentation

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Feb 24, 2024 286 likes •442 views

cysticfibrosis.org.uk How to manage a patient group Findacure Workshop, Friday 12 September 2014 Ed Owen, Chief Executive Cystic Fibrosis Trust Its the definition, stupid! Manage (v) 1. be in charge of (a business, organisation, or

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cysticfibrosis.org.uk

How to manage a patient group

Findacure Workshop, Friday 12 September 2014 Ed Owen, Chief Executive Cystic Fibrosis Trust

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It’s the definition, stupid!

Manage (v) 1. be in charge of (a business, organisation, or undertaking); run. synonyms: be in charge of, run, be head of, head, direct, control, preside over, lead, govern, rule, command, superintend, supervise, oversee, administer, organize, conduct, handle, take forward, guide, be at the helm of; inf. head up

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Don’t manage, liberate!

Engage
Listen
Interact
Enable
Promote

And keep doing it!

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Not just a nice thing “to do” …

It’s an essential part of:

Research
Care
Advocacy & campaigning
Fundraising

… of everything we do!

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Putting people with cystic fibrosis first

Voice and experience of

people with cystic fibrosis is the key to win funds, shape opinions, make change

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Not always easy …

Influence of wider stakeholders
Blurring of focus
10,000 voices – who to listen to, and how?

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And other reasons too …

Cross-infection
Disengagement
Time-consuming
Not always easy to accept what you don’t want to hear!

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Where are we coming from?

Strong, dedicated supporter community
High involvement of parents
Low rates of involvement/engagement with adults
Paternalistic and detached

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Traditional relationship

Binary relationship between the Cystic Fibrosis Trust and

community/people with cystic fibrosis

Cystic Fibrosis Trust Cystic fibrosis community Hope Information Support Funds

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Where do we want to be?

Strategic leadership organisation shaped by and promoting

voice/experience of people with cystic fibrosis and focused on meeting their needs, aspirations and concerns

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Strategy to beat CF for good

New, clearer purpose
Putting people with cystic fibrosis first
Mobilised support of the wider community
Active engagement of all people with cystic fibrosis

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How do we get there?

Needs research/surveys
Novel engagement methods – virtual meeting places
Social media/forums
Data registry to provide solid evidence base
Clearly articulated strategy to put interests of people with

cystic fibrosis first

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What will this look like?

Focus on personal storytelling
New capacity to engage & involve at all levels
People with cystic fibrosis leading advocacy/campaigns
Setting priorities in core functions

It won’t always be easy … but relax!

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