Please use this identifier to cite or link to this item:
Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Acceptability and perceived barriers and facilitators to creating a national Research Register to enable 'direct to patient' enrolment into research: the Scottish Health Research Register (SHARE)
Authors: Grant, Aileen
Ure, Jenny
Nicolson, Donald J
Hanley, Janet
Sheikh, Aziz
McKinstry, Brian
Sullivan, Frank M
Contact Email:
Keywords: Research register
Randomised controlled trial
Issue Date: 18-Oct-2013
Publisher: BioMed Central
Citation: Grant A, Ure J, Nicolson DJ, Hanley J, Sheikh A, McKinstry B & Sullivan FM (2013) Acceptability and perceived barriers and facilitators to creating a national Research Register to enable 'direct to patient' enrolment into research: the Scottish Health Research Register (SHARE), BMC Health Services Research, 13, Art. No.: 422.
Abstract: Background  Difficulties with recruitment pose a major, increasingly recognised challenge to the viability of research. We sought to explore whether a register of volunteers interested in research participation, with data linkage to electronic health records to identify suitable research participants, would prove acceptable to healthcare staff, patients and researchers.  Methods  We undertook a qualitative study in which a maximum variation sampling approach was adopted. Focus groups and interviews were conducted with patients, general practitioners (GP), practice managers and health service researchers in two Scottish health boards. Analysis was primarily thematic to identify a range of issues and concerns for all stakeholder groups.  Results  The concept of a national research register was, in general, acceptable to all stakeholder groups and was widely regarded as beneficial for research and for society. Patients, however, highlighted a number of conditions which should be met in the design of a register to expedite confidence and facilitate recruitment. They also gave their perceptions on how a register should operate and be promoted, favouring a range of media. GPs and practice managers were primarily concerned with the security and confidentiality of patient data and the impact a register may have on their workload. Researchers were supportive of the initiative seeing advantages in more rapid access to a wider pool of patients. They did raise concerns that GPs may be able to block access to personal patient data held in general practice clinical systems and that the register may not be representative of the whole population.  Conclusions  This work suggests that patients, healthcare staff and researchers have a favourable view of the potential benefits of a national register to identify people who are potentially eligible and willing to participate in health related research. It has highlighted a number of issues for the developers to incorporate in the design of research registers.
Type: Journal Article
DOI Link:
Rights: © Grant et al.; licensee BioMed Central Ltd. 2013 This article is published under license to BioMed Central Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Affiliation: HS Research - Stirling
NHS Lothian
University of Hull
NHS Lothian
University of Edinburgh
University of Edinburgh
University of Dundee

Files in This Item:
File Description SizeFormat 
Grant_et_al_BMC_HealthServicesResearch_2013.pdf644.25 kBAdobe PDFView/Open

This item is protected by original copyright

Items in the Repository are protected by copyright, with all rights reserved, unless otherwise indicated.

If you believe that any material held in STORRE infringes copyright, please contact providing details and we will remove the Work from public display in STORRE and investigate your claim.