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Table 2 Brand transformation exercise, detailing patient insight, desired transformation and what they need to know/believe to achieve this

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

[A] Patient insight at diagnosis [B] Desired transformation [C]Reasons to believe
How patients feel at diagnosis How we want patients to feel when they hear about the study What young people need to know in order to get from A to B
Apprehensive ‘Want to be part of this!’ Aims and objectives of study
Apprehensive Comforted Approachable
Confused Feel like their views are important Approachable
Curious Feel wanted – take part in national study Communication – telephone, email etc.
Depressed Feeling safe [details about them in study are confidential] Getting answer
Eager Helped Groovy updates
Feelings at Diagnosis Hope Hope
Frustrated Interested How will it help?
Hope Intrigued Inclusive
Horror Making a difference Info about survival
In denial Open Inspired
Lonely Part of the future Longer term
Lost Positive Meet people like you
Not interested Secure [non-isolated] Not to be alone
Not interested [in study] Sense of helpfulness Notice boards
Outcast Supported Persuasive
Over loaded To be driven Point of contact
Over loaded To be focussed Regular newsletter
Over whelmed To get involved Simple
Pressured Want to be part of it, want to make a difference Something to look forward to
Hurt   Survival
Relieved [answer]   User friendly
Scared   Website
Shocked   Welcome packs
Unknown/uncertainty   What will it achieve?
Unlucky   You’re not on your own
  1. Duplicate entries are where more than one Group cited this emotion.