title: A participatory study of teenagers and young adults views on access and participation in cancer research.
abstract: OBJECTIVE
  The purpose of this study was to elicit young people's views on access and participation in cancer research.
  
  
  METHODS
  Eight young people aged 18-25 years with a previous cancer diagnosis aged 15-24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focus group examining thoughts and opinions of research access and participation; individual reflection on access to different types of research; and creative interpretation of the workshop. Further consultation with 222 young people with cancer was conducted using an electronic survey.
  
  
  RESULTS
  Three themes emerged: • Patient choice: Young people thought it was their right to know all options about available research. Without knowledge of all available studies they would be unable to make an informed choice about participation. • Role of healthcare professionals as facilitators/barriers: Young people suggested non-clinical healthcare professionals such as social workers and youth support coordinators may be more suited to approaching young people about participation in psychosocial and health services research. • Value of the research: The what, when and how information was delivered was key in relaying the value of the study and assisting young people in their decision to participate. Further consultation showed approximately 70% wanted to find out about all available research. However, one third trusted healthcare professionals to decide which research studies to inform them of.
  
  
  CONCLUSIONS
  Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation.
authors.affiliation: Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, 250 Euston Road, London NW1 2PG, United Kingdom; School of Health and Social Care, London South Bank University, 103 Borough Rd, London SE1 0AA, United Kingdom. Electronic address: rtaylor13@nhs.net.
authors.forename: Rachel M
authors.initials: RM
authors.lastname: Taylor
authors.affiliation: Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, 250 Euston Road, London NW1 2PG, United Kingdom. Electronic address: Anita.solanki@uclh.nhs.uk.
authors.forename: Anita
authors.initials: A
authors.lastname: Solanki
authors.affiliation: Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, 250 Euston Road, London NW1 2PG, United Kingdom. Electronic address: natasha.aslam@uclh.nhs.uk.
authors.forename: Natasha
authors.initials: N
authors.lastname: Aslam
authors.affiliation: National Institute for Health Research, University College London Hospitals Biomedical Research Centre and Department of Oncology, University College London Hospitals NHS Foundation Trust, 250 Euston Road, London NW1 2PG, United Kingdom. Electronic address: Jeremy.whelan@uclh.nhs.uk.
authors.forename: Jeremy S
authors.initials: JS
authors.lastname: Whelan
authors.affiliation: National Institute for Health Research, University College London Hospitals Biomedical Research Centre and Department of Oncology, University College London Hospitals NHS Foundation Trust, 250 Euston Road, London NW1 2PG, United Kingdom; National Cancer Research Institute, Angel Building, 407 St John Street, London EC1V 4AD, United Kingdom. Electronic address: lorna.fern@cancer.org.uk.
authors.forename: Lorna A
authors.initials: LA
authors.lastname: Fern
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research / Q000458:organization & administration*; D055812:Community-Based Participatory Research / Q000458:organization & administration*; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D010353:Patient Education as Topic / Q000458:organization & administration*; D010358:Patient Participation / Q000523:psychology*; D018579:Patient Selection; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult
keywords: Access; Adolescent; Choice; Gate-keeper; Research; Teenagers; Young adult