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