The Waiting Room Project
Research type
Research Study
Full title
Involving the public in biobanking policy by using the waiting room as a knowledge centre.
IRAS ID
201943
Contact name
Jane Kaye
Contact email
Sponsor organisation
University of Oxford
Clinicaltrials.gov Identifier
10014, WT Application form reference number
Duration of Study in the UK
0 years, 2 months, 31 days
Research summary
Medical research into human diseases increasingly relies on biobanks for biological samples and donors’ associated data. Previous research has indicated that patients have little idea about biobank research, its findings or how to participate in new research (Teare et al 2015). This is despite policy expectations for public and patient involvement and engagement in medical research (Brett et al 2009). Participant-Centric Initiatives (PCIs) have been proposed as digital tools that can empower participants to engage with research via social media technologies (Kaye et al 2012).
The primary aim of this project is to survey the public about biobanking policy using a PCI. For this pilot study, computer tablets loaded with the project’s survey will be available to people in clinics for them to use while waiting.
The pilot survey will be trialed in three clinical waiting rooms in Oxford over three months. People will be approached by the researcher, or a volunteer acting as an ambassador for the project, and asked if they would like to view and participate in the survey while they are waiting. If they express interest they will be handed a computer tablet with the survey loaded on to it. The survey takes approximately 10 minutes to complete. If the person is concerned about being called for their consultation they will be invited to view the device and survey after their appointment, if convenient. Leaflets with the website uniform resource locator will be available for people to take away to return to the site later and share with others. The researcher and ambassadors will be able to help people unfamiliar with digital technology. In addition to collecting survey data from the pilot study we will evaluate people’s use of digital technology to engage with medical research in waiting rooms. These data will inform the subsequent development and operationalisation of the PCI that we are commissioning.
Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S, Bayliss H (2009) The PIRICOM Study: a systematic review of the conceptualisation, measurement, impact and outcomes of patient and public involvement in health and social care research. UK Clinical Research Collaboration, London.
Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, Kanellopoulou N, Lund D, MacArthur DG, Mascalzoni D, Shepherd J, Taylor PJ, Terry SF, Winter SF (2012) From patients to partners: participant-centric initiatives in biomedical research. Nature Reviews Genetics 13(5): 371-376
Teare HJA, Morrison M, Whitely EA, Kaye J (2015) Towards ‘Engagement 2.0’: insights from a study of dynamic consent with biobank participants. Digital Health 0(0): 1-13 doi: 10.1177/2055207615605644REC name
South Central - Hampshire A Research Ethics Committee
REC reference
17/SC/0376
Date of REC Opinion
26 Jul 2017
REC opinion
Favourable Opinion