title: Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT.
abstract: BACKGROUND
  Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'.
  
  
  METHODS
  Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference.
  
  
  RESULTS
  BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes.
  
  
  CONCLUSIONS
  Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity.
authors.affiliation: Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, NW1 2PG, UK. rtaylor13@nhs.net.
authors.forename: Rachel M
authors.initials: RM
authors.lastname: Taylor
authors.affiliation: Pharmaceutical Advertising, London, HA5 2AA, UK. jasjeetmohain@yahoo.co.uk.
authors.forename: Jasjeet
authors.initials: J
authors.lastname: Mohain
authors.affiliation: Great Ormond Street Hospital for Children NHS Foundation Trust and London South Bank University, 103 Borough Road, London, SE1 OAA, UK. faith.gibson@lsbu.ac.uk.
authors.forename: Faith
authors.initials: F
authors.lastname: Gibson
authors.affiliation: Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, NW1 2PG, UK. anita.solanki@uclh.nhs.uk.
authors.forename: Anita
authors.initials: A
authors.lastname: Solanki
authors.affiliation: National Institute for Health Research, University College London Hospitals Biomedical Research Centre, London, UK. Jeremy.whelan@uclh.nhs.uk.
authors.forename: Jeremy
authors.initials: J
authors.lastname: Whelan
authors.affiliation: Department of Oncology, National Cancer Research Institute Teenage and Young Clinical Studies Group, 1st Floor Central, 250 Euston Road, London, NW1 2PG, UK. Lorna.fern@ncri.org.uk.
authors.forename: Lorna A
authors.initials: LA
authors.lastname: Fern
mesh_terms: D000293:Adolescent; D016497:Adolescent Health Services; D000328:Adult; D004493:Education / Q000379:methods; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010353:Patient Education as Topic / Q000379:methods*; D010358:Patient Participation / Q000379:methods* / Q000523:psychology / Q000706:statistics & numerical data; D015203:Reproducibility of Results; D012106:Research; D012107:Research Design; D055815:Young Adult