Patient Centred Research in MCCNLynda Appleton, Lesley Dewar, Maria Flynn,

Bob Jones, Terry Kavanagh, Paul Large,

Doing the Groundwork12 months ago – no ideas, no team, no project

plan, no network, no money........ But aspirational vision!

Consultation, Collaboration, User -led research?MCCN PCP involvement strategy offered real

potential for innovative approach to work with patient, carers and public

Potential to develop and explore a genuine working research partnership with patient, carers and public

Sowing the SeedPatient council meetings at CCOMCCN conference at Ness GardensDevelopment of ideas which patients and service

users thought were important areas for researchCirculation of emerging ideas through networksGroup and individual meetings with interested

peopleIterative process to refine ideaEmergence of the research team

Nurturing the Idea

Importance of social language on people affected by cancer and their families

How they see themselves in the period after treatment

UncertaintyRe-adjustment to everyday life

What about the teams experience of working together on a research project?

Potting onTeam meetings and discussionsAssessing feasibility of carrying out projectRefinement of ideasDraft of project outlineRepresentation at NCRI annual conferenceSubmission of outline application to Macmillan

User Led Research Grant Competition

SHORTLISTED TO SUBMIT FULL APPLCIATION!

Hardening OffFull project proposal written18 Month Project to explore

how language and metaphor influences adjustment and well being in the period following cancer treatment

To describe the experience of working together on the research project

Identification of ‘Lead’ responsibilities in project for all team members

Submitted to Macmillan by deadline of 16th February

Awaiting the HarvestApplication for £60,000 research grant Plan to appoint full time Research AssociateRecruiting study participants from across the

networkSemi-structured interviews Team to keep ‘reflective diaries’Wide dissemination of lay summary of study

findings through MCCN partnership groups, CNGs and support networks

Results of competition expected early April 2009!!!