Transcript - Brightlight

A multi-faceted approach to
collaboration: The BRIGHTLIGHT:
experience
Dr Rachel Taylor & Dr Lorna Fern on
behalf of the BRIGHTLIGHT Team
NIHR RP-PG-1209-10013
No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
John Donne
The BRIGHTLIGHT STUDY
The 2012 TYA Cancer Cohort Study
UCLH:

Professor Jeremy Whelan (CI)

Dr Rachel Taylor

Anita Solanki

Susie Pearce

Martin Lerner
UCL:

Dr Julie Barber

Professor Steve Morris

Professor Rosalind Raine
University of Leeds:

Dr Richard Feltbower
St James’ University Hospital

Dr Dan Stark
Cancer Research UK

Dr Lorna Fern
GOSH/LSBU

Professor Faith Gibson
London South Bank University

Dr Cecilia Vindrola
University Hospitals of Southampton

Louise Hooker
NWCIS

Dr Tony Moran

Dr Catherine O’Hara
NCRI CSG TYA CCG:

Hannah Millington
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
NIHR RP-PG-1209-10013
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
Wider TYA
community
Industry
Young people
NIHR Cancer
Research Network
BRIGHTLIGHT
Academics &
higher education
Quantitative
Qualitative
Health
professionals
≈150 acute
NHS Trusts
Cancer
registries
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


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
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%
100%
100%
33%
100%
60%
60%
33%
45%
66%
0%
100%
25%
40%
100%
100%
66%
100%
100%
43%
33%
43%
40%
100%
100%
50%
100%
100%
100%
100%
50%
71%
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
Collaboration: Young people
Youth & adults sharing decisions
8. Youth-initiated & adults sharing decisions
7. Youth-initiated & directed
6. Adult-initiated, shared decisions
5. Consulted & informed
4. Assigned & informed
3. Tokenism
2. Decoration
1. Manipulation
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
Identify
research area
Design the
research study
Publish
research
results
James Ashton Katie Brooman
Carol Starkey
Hannah Millington Tom Grew
Analyse research
results
Carry out the
research
Eight key themes informed the BRIGHTLIGHT
survey
Life changing impact of
diagnosis
Provision of information
Place of care
Role of health professionals
Coping:
Peer support
Psychological support
Life after cancer
Thinking back to the ‘place of care project’. How
important do you think ‘quality of life’ is? (n=149)
Proportion of answers (%)
0
5
10
15
20
Survival and quality
of life and survival
are equally important
Quality of life is
less important
30
35
40
45
50
55
60
65
70
75
80
73.4%
Quality of life is
more is more
important than
survival
Survival is the
only important
thing
25
11.9%
10.5%
4.2%
Testing materials
Cognitive interviews
Focus groups
BRIGHTLIGHT
Branding
Data collection
Young persons reference group
Contact materials
Website
Design
Study design
Content
Clinic posters
Newsletters
What’s in a name!?
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
-Aims and objectives of study
-Approachable
-Getting answers
-Groovy updates
-Inclusive and not alone
-Regular Newsletter
-Something to look forward to
-‘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
If the study were an object
Our brand identity
 Friendly
 Supportive
 Inspiring
Reasons to believe
1. 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 England
Based 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 collaborators
Special thanks to the following:
Sue Morgan MBE & the team in Leeds
Professor Allan Pacey
Alexandra Brownsdon
Teenage Cancer Trust
CLIC Sargent
Pan Birmingham Cancer Research Network & the TYA teams at University
Hospital Birmingham, Birmingham Children’s Hospital & the Royal
Orthopaedic Hospital
The TYA team at Addenbrooks Hospital
The 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-120910013). The views expressed are those of the author(s) and not
necessarily those of the NHS, the NIHR or the Department of Health.
Email: [email protected]
Website: www.brightlightstudy.com
Phone: 0741 555 7668
www.brightlightstudy.com