Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT

Journal article


Taylor, RM, Mohain, J, Gibson, F, Solanki, A, Whelan, J and Fern, LA (2015). Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT. BMC Medical Research Methodology. 15 (20).
AuthorsTaylor, RM, Mohain, J, Gibson, F, Solanki, A, Whelan, J and Fern, LA
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.

KeywordsHumans; Neoplasms; Longitudinal Studies; Reproducibility of Results; Research; Research Design; Education; Adolescent; Adult; Adolescent Health Services; Patient Participation; Female; Male; Patient Education as Topic; Young Adult; Adolescent; Adolescent Health Services; Adult; Education; Female; Humans; Longitudinal Studies; Male; Neoplasms; Patient Education as Topic; Patient Participation; Reproducibility of Results; Research; Research Design; Young Adult
Year2015
JournalBMC Medical Research Methodology
Journal citation15 (20)
PublisherBRIGHTLIGHT
Digital Object Identifier (DOI)doi:10.1186/s12874-015-0014-1
Publication dates
Print14 Mar 2015
Publication process dates
Deposited30 Nov 2017
Accepted04 Mar 2015
Accepted author manuscript
License
CC BY 4.0
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