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)
1 Population Health Sciences, Medical Research Institute, University of Dundee, The Mackenzie Building, KirstySemple Way, Dundee DD2 4BF, Scotland
2 Centre for Inflammation Research, Queens Medical Research Institute, 47 Little, France, Crescent, Edinburgh, EH16 4TJ,Scotland
3 Centre for Health and Population Sciences, Hull York Medical School, University of Hull, Hertford Building, Cottingham Road, Hull HU6 7RX, England
4 NHS Lothian Research and Development, Queens Medical Research Institute, 47 Little France Crescent, Edinburgh, EH16 4TJ, Scotland
5 eHealth Research Group, Centre for Population Health Sciences, The University of Edinburgh, Medical School, Teviot Place, Edinburgh EH8 9AG, Scotland
6 Division of General Internal Medicine and Primary Care, Brigham and Women’s Hospital/Harvard Medical School, 1620 Tremont Street, 3rd Floor, Boston, MA 02120-1613, USA
BMC Health Services Research 2013, 13:422 doi:10.1186/1472-6963-13-422Published: 18 October 2013
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.
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.
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.
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.