Post on 19-Jan-2016
NIHR RP-PG-1209-10013
A multi-faceted approach to collaboration: The BRIGHTLIGHT:
experienceDr Rachel Taylor & Dr Lorna Fern on
behalf of the BRIGHTLIGHT Team
No man is an island,Entire of itself.
Each is a piece of the continent,A part of the main.
John Donne
The BRIGHTLIGHT STUDYThe 2012 TYA Cancer Cohort Study
UCLH: Professor Jeremy Whelan (CI) Dr Rachel Taylor Anita Solanki Susie Pearce Martin LernerUCL: Dr Julie Barber Professor Steve Morris Professor Rosalind RaineUniversity of Leeds: Dr Richard FeltbowerSt James’ University Hospital Dr Dan Stark
Cancer Research UK Dr Lorna Fern GOSH/LSBU Professor Faith Gibson London South Bank University Dr Cecilia VindrolaUniversity Hospitals of Southampton Louise HookerNWCIS Dr Tony Moran Dr Catherine O’HaraNCRI CSG TYA CCG: Hannah Millington
NIHR RP-PG-1209-10013
BRIGHTLIGHT
BRIGHTLIGHT is an NIHR funded programme grant (ref: RP-PG-1209-10013)
Aim is to evaluate teenage and young adult cancer services in England through a series of inter-connected studies
Central to BRIGHTLIGHT is the 2012 TYA Cancer Cohort Study• Evaluation of care according to patient experience
NIHR RP-PG-1209-10013
BRIGHTLIGHT participants
BRIGHTLIGHT cohort includes 2,012 young people
Longitudinal study over 3-years Data collection through a bespoke survey:
the BRIGHTLIGHT Survey Experience survey reflexive to young people’s life
situation
What is collaboration?
Collaboration is working together to achieve a goal. It is a recursive process where two or more people or organisations work together to realize shared goals (Wikipedia, accessed 19/10/12)
The BRIGHTLIGHT Collaboration
BRIGHTLIGHT
Health professionals
Young people
Academics & higher education
Cancer registries
NIHR Cancer Research Network
Quantitative Qualitative ≈150 acute NHS Trusts
Wider TYA community Industry
Collaboration: Academic
Collaboration: Cancer registries
North West Cancer Intelligence Service (NWCIS)• Identify ALL young people diagnosed with cancer• Cancer Waiting Times Database
• First definitive treatment data• Patient identifiable data without consent
• Secretary of State for Health approval• National Information Governance Board (NIGB)
Collaboration: NIHR Cancer Research Network
32 Local networks (current view)
Researchers in every NHS Trust/every hospital Local knowledge Administrators
Collaboration: Network researchers
Cancer clinical trials Range of backgrounds Range of expertise Limited-to-no experience in ‘health services’
research How can we facilitate transition from trial to
HSR?
Focus groups with researchers
Aims To reflect on the study design and role in
recruitment Explore potential problems in recruitment Discuss methods to overcome problems
Participants
34 researchers• Network Managers• Clinical Research Nurses• Clinical Trial Practitioners• Data Managers
21 NIHR CRN
Methods
Focus groups - challenges• Geographical spread• Qualifications
Solution - Ideation Exchange• Online moderated ‘focus’ group• Two sessions
Results
Challenges Encouraging participation Role in recruitment
• Identifying young people• Gaining consent• Initial contact• Speaking to young people
Collaboration: Health professionals
29%
33%
33%60%
66% 100%
25%
66%100%
33%
40%
50%
100%
50%
100% 100%
71%
100%
100%
60%
45%
0%
100%40%
100%100%
43%43%
100%
100%
100%
100%
BRIGHTLIGHT Principal Investigators
Oncologists Haematologists Cardiologist Gastroenterologist Urologist Paediatrician
Lead Nurse Nurse Consultant Advanced Nurse
Practitioner Clinical Nurse
Specialist Research Nurse Clinical Trials
Practitioner
Collaboration: Industry
Data collection• Survey expertise• Interviews in the home• Nationwide• Languages• Disability • Quality control
Collaboration: Wider cancer community
1. Manipulation
8. Youth-initiated & adults sharing decisions
4. Assigned & informed
7. Youth-initiated & directed
6. Adult-initiated, shared decisions
5. Consulted & informed
3. Tokenism
2. Decoration
Youth & adults sharing decisions
Collaboration: Young people
Hart (1997) Ladder of Participation, children’s participation: From tokenism to citizenship, UNICEF
How?
http://www.ukdrn.org/lrn/nec/public.aspx
The Core Consumer Group
James Ashton
Hannah Millington
Katie Brooman
Tom Grew
Carol Starkey
Identify research area
Design the research studyPublish
research results
Carry out the research
Life changing impact of
diagnosis
Provision of information
Place of care
Role of health professionals
Coping:
Peer support
Psychological support
Life after cancer
Analyse research results
Life changing impact of diagnosis
Provision of information
Place of care
Role of health professionals
Coping:
Peer support
Psychological support
Life after cancer
Eight key themes informed the BRIGHTLIGHT survey
Thinking back to the ‘place of care project’. How important do you think ‘quality of life’ is? (n=149)
73.4%
11.9%
10.5%
4.2%
0 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80
Survival and quality of life and
survival are equally important
Quality of life is more is more
important than survival
Survival is the only
important thing
Quality of life is less
important
Proportion of answers (%)
BRIGHTLIGHT
Young persons reference group
Focus groups
Study designTesting materials
Website
Content Design
Cognitive interviews
Contact materials
Clinic posters Newsletters
Branding Data collection
What’s in a name!?
Essence of care
Colossal youth
The Essence of TYA Cancer Care
‘Branding workshop’
Nine young people aged 18-26 Aged 14-25 at diagnosis Two independent creative advisors December 2011
Aims
Generate name and brand for the study Create ‘moodboards’ for logo design
Brand Transformation-Anger -Confused-Depressed
-In denial-Lonely -Not interested (in study)
-Pressured -Hurt -Relieved (answer)-Scared
-‘Want to be part of this’ -My views are important -I want to take part in national study
-Interested-Intrigued -I can make a difference
-Aims and objectives of study-Approachable
-Getting answers-Groovy updates
-Inclusive and not alone -Regular Newsletter
-Something to look forward to
If the study were an object
Our brand identity
Friendly Supportive Inspiring
Reasons to believe1. Making a difference 2. My views are important 3. Its inclusive 4. First of its kind 5. Long awaited
Thought shower of names
Name Reason
LILAC Living In Life Accommodating Cancer
DROP Each patient represents a drop, lots of drops makes a ripple which in turn makes waves of change.
PICS Powerful Innovate Cancer Study
PYSD Powerful Youth Study
BRIGHTLIGHT Light at the end of the tunnel, leading the way for other young people
The logo
Essence to BRIGHTLIGHT
Summary BRIGHTLIGHT: the most extensive evaluation
of cancer services in EnglandBased on young people’s needs as well as health
professions and researchers Its success has been and is dependant on
Extensive inter-professional, inter-organisational collaboration
Extensive involvement and engagement with young people
Collaboration- not for the faint hearted!
Conclusion
“I like the idea that it’s designed by young people; I worked for the university here for a while and we did a study there looking at academic feedback when we had it designed and run by young people and it was completely revolutionary to the university and I’m sure it’s just as revolutionary in the healthcare world.”
Male, aged 22
Other collaboratorsSpecial thanks to the following:
Sue Morgan MBE & the team in LeedsProfessor Allan PaceyAlexandra BrownsdonTeenage Cancer Trust
CLIC SargentPan Birmingham Cancer Research Network & the TYA teams at University
Hospital Birmingham, Birmingham Children’s Hospital & the Royal Orthopaedic Hospital
The TYA team at Addenbrooks HospitalThe TYA team at University Hospitals of Southampton
The TYA team at Guy’s and St Thomas’ Hospital
Thank you for your time
This presentation presents independent research funded by the National
Institute for Health Research (NIHR) under its Programme Grants for
Applied Research Programme (Grant Reference Number RP-PG-1209-
10013). The views expressed are those of the author(s) and not
necessarily those of the NHS, the NIHR or the Department of Health.
Email: brightlight@uclh.nhs.uk
Website: www.brightlightstudy.com
Phone: 0741 555 7668
www.brightlightstudy.com