Social media: sustain, retain and support patients in clinical trials

• Research type

  Research Study

• Full title

  The role of social media to communicate, inform and retain patients in a clinical research trial (SoMe Research)

• IRAS ID

  244081

• Contact name

  Cristina Vasilica

• Contact email

  C.M.Vasilica1@salford.ac.uk

• Sponsor organisation

  British Renal Society

• Clinicaltrials.gov Identifier

  N/A, NA

• Duration of Study in the UK

  2 years, 6 months, 30 days

• Research summary

  Research studies are essential to improve healthcare, yet many fail to recruit their planned number of participants, which has direct implications on the reliability of study findings. Emerging evidence suggests social media provides an effective strategy to recruit people into research studies, however, there is limited evidence whether such an approach increases participant retention within longitudinal research.
  The primary aim of this study is to investigate the impact of social media as a tool to communicate, inform and retain research participants in a clinical research study. The developmental, exploratory-observational study will be conducted in two distinct phases linked an existing single multi-centre randomised controlled trial (RCT) as a pilot case study.
  Phase 1: Development of online social media networks. The study focus is on the creation and evaluation of the impact of social media online community groups to facilitate the flow of information, communication and retention of research participants. Independent social media community groups will be established for both the intervention and non-intervention study groups within BISTRO case-study (IRAS Project number 20613). Patients and clinicians identified Facebook as a suitable platform for this project. The study team will create, manage and moderate three secret online (non-searchable, where only invited members can see the name of the group, participants and posts) community groups:
  • Patient Advisory Group (PAG): Lead Moderation/Advisory group
  • BISTRO Research Participants 1 (BRP1): Intervention Group
  • BISTRO Research Participants 2 (BRP2): Non-intervention Group

  Phase 2: Evaluation of the social media strategies using a mixed method approach to provide evidence as to what works, why, for who with respect to using social media to support sustained research involvement. The methods used will examine research participant experience, social media activity/engagement, length of time participated in the main BISTRO study. These will include scraping (downloading) and analysis of community group data, bi-monthly group polls, a virtual focus group discussion, PAG reflections on moderation and training and online exit poll/survey for all participants.

• REC name

  South West - Cornwall & Plymouth Research Ethics Committee

• REC reference

  18/SW/0202

• Date of REC Opinion

  31 Aug 2018

• REC opinion

  Further Information Favourable Opinion