1. BEING INVOLVED ….WHAT IT MEANS TO PEOPLE AFFECTED BY CANCER Carolyn Morris Sussex Cancer Network Partnership Group

2. This talk will cover what people say  About participating in research as members of trial management groups, as co-researchers/advisers on protocols & patient information  I.E. patients & carers involved as consumers, not as trial participants  The positives ~ lot of good experiences to report  The downsides & some ideas about how those could be improved  What some of the benefits to you as researchers might be of involving people affected by cancer in your work  About participating in research as members of trial management groups, as co-researchers/advisers on protocols & patient information  I.E. patients & carers involved as consumers, not as trial participants  The positives ~ lot of good experiences to report  The downsides & some ideas about how those could be improved  What some of the benefits to you as researchers might be of involving people affected by cancer in your work

3. THE STUDY: WHAT OUR FINDINGS ARE BASED ON  Participants : 64 members of local, regional & national user groups  From cancer services, cancer research & palliative care – including some in hospice groups  Focus groups & interviews  CM one of two consumer researchers, active in cancer service improvement & research groups  Team led by professional researcher, now at Southampton University & supported by cross disciplinary advisory group  Our involvement from design to dissemination  Funded by Macmillan’s User –Led Research Competition  Participants : 64 members of local, regional & national user groups  From cancer services, cancer research & palliative care – including some in hospice groups  Focus groups & interviews  CM one of two consumer researchers, active in cancer service improvement & research groups  Team led by professional researcher, now at Southampton University & supported by cross disciplinary advisory group  Our involvement from design to dissemination  Funded by Macmillan’s User –Led Research Competition

4. SOME OF OUR FINDINGS MOTIVATIONS  Complex & varying reasons for involvement  Can change ~ what brings people in not always what keeps people in  Putting something back, repayment for good treatment  Turning negative experience into something constructive “something good out of something bad”  Not all altruistic: people acknowledge other reasons  Whatever the initial trigger, people want to make a difference “I was excited about this chance to feed back the experiences of my parents’ illnesses and hopefully make a difference for patients that will follow on from here.” consumer research panel chair  Complex & varying reasons for involvement  Can change ~ what brings people in not always what keeps people in  Putting something back, repayment for good treatment  Turning negative experience into something constructive “something good out of something bad”  Not all altruistic: people acknowledge other reasons  Whatever the initial trigger, people want to make a difference “I was excited about this chance to feed back the experiences of my parents’ illnesses and hopefully make a difference for patients that will follow on from here.” consumer research panel chair

5. AND ONCE INVOLVED …. BENEFITS ~1  Finding a role, renewed sense of purpose “You do feel worthless if you can’t go back to work after treatment and you feel like you’ve been thrown on the scrap heap. This is an opportunity to give some of your skills from your working life.” “It has given me a sense of purpose. Has been a distraction and widened my horizons after having them shut down during cancer treatment”  New skills “I have learnt how to set a web site up and how to maintain a web site. So I am getting skills, otherwise your brain goes dead.”  New confidence, regain confidence lost during illness  Regained self esteem “My self-esteem is greater. It does give me a buzz to think I can be of some help even though I’m not clinically trained or anything like that. I’m just using my experience for a positive”  Finding a role, renewed sense of purpose “You do feel worthless if you can’t go back to work after treatment and you feel like you’ve been thrown on the scrap heap. This is an opportunity to give some of your skills from your working life.” “It has given me a sense of purpose. Has been a distraction and widened my horizons after having them shut down during cancer treatment”  New skills “I have learnt how to set a web site up and how to maintain a web site. So I am getting skills, otherwise your brain goes dead.”  New confidence, regain confidence lost during illness  Regained self esteem “My self-esteem is greater. It does give me a buzz to think I can be of some help even though I’m not clinically trained or anything like that. I’m just using my experience for a positive”

6. BENEFITS ~2  Learning – about cancer & its treatment, about new developments, self development. Lot of intellectual stimulation reported  A way of living positively with cancer “ In a funny sort of way I think it has helped me to deal with treatment. It has helped me to only give it a small percentage of my intellectual thinking and my emotional feeling. It has meant that life didn’t stop or life didn’t change, it grew.  Sense of closeness, camaraderie “It isn’t a support group but my God it’s a support group!” “We share something very significant. We’ve either personally looked death in the face or seen it for somebody that we love. So that does bring you together.”  Sense of achievement ~ getting things done  Involvement could be fun. Our transcripts record a lot of laughter  Learning – about cancer & its treatment, about new developments, self development. Lot of intellectual stimulation reported  A way of living positively with cancer “ In a funny sort of way I think it has helped me to deal with treatment. It has helped me to only give it a small percentage of my intellectual thinking and my emotional feeling. It has meant that life didn’t stop or life didn’t change, it grew.  Sense of closeness, camaraderie “It isn’t a support group but my God it’s a support group!” “We share something very significant. We’ve either personally looked death in the face or seen it for somebody that we love. So that does bring you together.”  Sense of achievement ~ getting things done  Involvement could be fun. Our transcripts record a lot of laughter

7. DOWNSIDES  Loosing people you get close to  Not having your skills recognised “I am more than my disease”  Unclear roles & expectations “It can be incredibly difficult to just find out what it is you’re supposed to do, what people expect of you, you know, because there’s no..no written in stone job roles “  Some feel undervalued & marginalised. Tokenism and negative perceptions “the usual suspects”  Frustrations about e.g the pace of change, research timescales  Lack of feedback: people often didn’t know if they were having any impact.  Information gained could contribute to stress “I was not fully prepared for the impact of the very wide amount of information, much of which is not very cheerful, in a situation which is already stressful.”  Practicalities. They really matter. Expenses & recognition. Timing.  Loosing people you get close to  Not having your skills recognised “I am more than my disease”  Unclear roles & expectations “It can be incredibly difficult to just find out what it is you’re supposed to do, what people expect of you, you know, because there’s no..no written in stone job roles “  Some feel undervalued & marginalised. Tokenism and negative perceptions “the usual suspects”  Frustrations about e.g the pace of change, research timescales  Lack of feedback: people often didn’t know if they were having any impact.  Information gained could contribute to stress “I was not fully prepared for the impact of the very wide amount of information, much of which is not very cheerful, in a situation which is already stressful.”  Practicalities. They really matter. Expenses & recognition. Timing.

8. SO WHAT CAN YOU AS RESEARCHERS DO?  Recognise the benefits  Use them in recruiting people  Do they have additional skills you can draw on? a background in counselling, an understanding of diversity ? Marketing?  Watch out for the negatives & take preventative action  Make roles clear~ discuss them, early and be prepared to review  Make the practical stuff clear. Don’t wait to be asked. What’s the time commitment? How handle expenses? Make sure they can park!  Keep in touch & review how your consumers are feeling.  Are they in the loop? Do you let them know what happens to their suggestions? We do this stuff because we want to make a difference, after all  Do people need a wee bit of extra support at times? How can you help? It may be just a phone call….  Think about the impact of what you say & how you say it.  Recognise the benefits  Use them in recruiting people  Do they have additional skills you can draw on? a background in counselling, an understanding of diversity ? Marketing?  Watch out for the negatives & take preventative action  Make roles clear~ discuss them, early and be prepared to review  Make the practical stuff clear. Don’t wait to be asked. What’s the time commitment? How handle expenses? Make sure they can park!  Keep in touch & review how your consumers are feeling.  Are they in the loop? Do you let them know what happens to their suggestions? We do this stuff because we want to make a difference, after all  Do people need a wee bit of extra support at times? How can you help? It may be just a phone call….  Think about the impact of what you say & how you say it.

9. WHY DO IT AT ALL? What’s in it for you? Involving patients and the public in your research design processes  Can lead to a study that is more relevant to people’s needs  Can encourage more people to take part in the study itself  Can help with ethics committees  Helps empower those involved  Is firmly part of NCRN strategy now  And…….the inclusion of patients & the public is, increasingly, explicitly sought by funders Involving patients and the public in your research design processes  Can lead to a study that is more relevant to people’s needs  Can encourage more people to take part in the study itself  Can help with ethics committees  Helps empower those involved  Is firmly part of NCRN strategy now  And…….the inclusion of patients & the public is, increasingly, explicitly sought by funders