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

cysticfibrosis.org.uk How to manage a patient group Findacure Workshop, Friday 12 September 2014 Ed Owen, Chief Executive Cystic Fibrosis Trust

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 2

Don’t manage, liberate!  Engage  Listen  Interact  Enable  Promote And keep doing it! 3

Not just a nice thing “to do” … It’s an essential part of:  Research  Care  Advocacy & campaigning  Fundraising … of everything we do! 4

Putting people with cystic fibrosis first  Voice and experience of people with cystic fibrosis is the key to win funds, shape opinions, make change 5

Not always easy …  Influence of wider stakeholders  Blurring of focus  10,000 voices – who to listen to, and how? 6

And other reasons too …  Cross-infection  Disengagement  Time-consuming  Not always easy to accept what you don’t want to hear! 7

Where are we coming from?  Strong, dedicated supporter community  High involvement of parents  Low rates of involvement/engagement with adults  Paternalistic and detached 8

Traditional relationship  Binary relationship between the Cystic Fibrosis Trust and community/people with cystic fibrosis Hope Information Support Cystic Cystic Fibrosis fibrosis Trust community Funds 9

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 10

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 11

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 12

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! 13

Thank you cysticfibrosis.org.uk