Brian McKinstry
Cohort profile: the Scottish Research register SHARE. A register of people interested in research participation linked to NHS data sets
McKinstry, Brian; Sullivan, Frank M; Vasishta, Shobna; Armstrong, Roma; Hanley, Janet; Haughney, John; Philip, Sam; Smith, Blair H; Wood, Amanda; Palmer, Colin N A
Authors
Frank M Sullivan
Shobna Vasishta
Roma Armstrong
Dr Janet Hanley J.Hanley@napier.ac.uk
Associate Professor
John Haughney
Sam Philip
Blair H Smith
Amanda Wood
Colin N A Palmer
Abstract
Purpose Recruitment to trials is often difficult. Many trials fail to meet recruitment targets resulting in underpowered studies which waste resources and the time of those who participated. While there is evidence that many people are willing to take part in research, particularly if it involves a condition from which they suffer, researchers are unable to easily contact such people often relying on busy clinicians to identify them. Many clinicians perceive themselves as too busy to take part in research activities. The Scottish Health Research Register SHARE adopts an approach which asks the public to consent to their data held in National Health Service databases to be used to determine their suitability for research projects. Additionally, participants can consent for spare blood, left after routine venepuncture to be automatically identified in the laboratory and stored for future research studies.
Participants Anyone over the age of 16 years in Scotland can participate. Participants are approached through a range of methods including directly at outpatient clinics and general practitioners practices, leaflets with hospital letters and personal email from employers.
Findings to date SHARE has recruited around 130 000 people. SHARE has demonstrated that it can quickly and efficiently recruit to studies, over 20 until now. In addition, it can be used to administer questionnaire studies by email and recruit to patient and public involvement groups.
Future plans SHARE continues to steadily recruit with the ambition of eventually achieving 1 000 000 people in Scotland. We are steadily increasing the number of data sets we use for identifying participants. We are adding a mobile app which will facilitate dissemination about research and allow the collection of physiological and activity data if desired. We anticipate that SHARE will soon become the main source of health research recruitment in Scotland
Citation
McKinstry, B., Sullivan, F. M., Vasishta, S., Armstrong, R., Hanley, J., Haughney, J., Philip, S., Smith, B. H., Wood, A., & Palmer, C. N. A. (2017). Cohort profile: the Scottish Research register SHARE. A register of people interested in research participation linked to NHS data sets. BMJ Open, 7(2), e013351. https://doi.org/10.1136/bmjopen-2016-013351
Journal Article Type | Article |
---|---|
Acceptance Date | Jan 3, 2017 |
Online Publication Date | Feb 1, 2017 |
Publication Date | 2017-02 |
Deposit Date | Jun 13, 2017 |
Publicly Available Date | Jun 14, 2017 |
Journal | BMJ Open |
Electronic ISSN | 2044-6055 |
Publisher | BMJ Publishing Group |
Peer Reviewed | Peer Reviewed |
Volume | 7 |
Issue | 2 |
Pages | e013351 |
DOI | https://doi.org/10.1136/bmjopen-2016-013351 |
Keywords | SHARE, NHS data sets, trial recruitment, |
Public URL | http://researchrepository.napier.ac.uk/Output/851590 |
Contract Date | Jun 13, 2017 |
Files
Cohort profile: the Scottish Research register SHARE. A register of people interested in research participation linked to NHS data sets
(1.2 Mb)
PDF
Publisher Licence URL
http://creativecommons.org/licenses/by-nc/4.0/
Copyright Statement
This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
You might also like
Qualitative study of telemonitoring of blood glucose and blood pressure in type 2 diabetes.
(2015)
Journal Article
Downloadable Citations
About Edinburgh Napier Research Repository
Administrator e-mail: repository@napier.ac.uk
This application uses the following open-source libraries:
SheetJS Community Edition
Apache License Version 2.0 (http://www.apache.org/licenses/)
PDF.js
Apache License Version 2.0 (http://www.apache.org/licenses/)
Font Awesome
SIL OFL 1.1 (http://scripts.sil.org/OFL)
MIT License (http://opensource.org/licenses/mit-license.html)
CC BY 3.0 ( http://creativecommons.org/licenses/by/3.0/)
Powered by Worktribe © 2025
Advanced Search