Cohort profile: The Scottish Research Register SHARE: A register of people interested in research participation linked to NHS datasets

Brian McKinstry; Francis M. Sullivan; Shobna Vasishta; Roma Armstrong; Janet Hanley; John  Haughney; Sam Philip; Blair H. Smith; Amanda Wood; Colin N. A. Palmer

doi:10.1136/bmjopen-2016-013351

Cohort profile: The Scottish Research Register SHARE: A register of people interested in research participation linked to NHS datasets

Brian McKinstry, Francis M. Sullivan, Shobna Vasishta, Roma Armstrong, Janet Hanley, John Haughney, Sam Philip, Blair H. Smith, Amanda Wood, Colin N. A. Palmer (Lead / Corresponding author)

Research output: Contribution to journal › Article › peer-review

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Abstract

Purpose: Recruitment to trials is often difficult. Many trials fail to meet recruitment targets resulting in under-powered 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 NHS 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 out-patient clinics and GP 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 to date. 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 datasets 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 SHARE will soon become the main source of health research recruitment in Scotland

Original language	English
Article number	e013351
Pages (from-to)	1-8
Number of pages	8
Journal	BMJ Open
Volume	7
Issue number	2
DOIs	https://doi.org/10.1136/bmjopen-2016-013351
Publication status	Published - 1 Feb 2017

Keywords

Research Methods
Health Informatics
Research Subject Rectruitment

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10.1136/bmjopen-2016-013351Licence: CC BY-NC

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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
Final published version, 1.16 MBLicence: CC BY-NC

The Scottish eHealth Informatics Research Centre (E-HIRCs) (Joint with Universities of Aberdeen, Glasgow, Edinburgh, Strathclyde, St Andrews & Leicester and ISD)
Colhoun, H. (Investigator), Donnan, P. (Investigator), Guthrie, B. (Investigator), Jefferson, E. (Investigator), MacDonald, T. (Investigator), McCowan, C. (Investigator), Morris, A. (Investigator), Pearson, E. (Investigator), Sullivan, F. (Investigator) & Swedlow, J. (Investigator)
Medical Research Council
1/03/13 → 31/12/18
Project: Research

Health Informatics Centre
Health and Clinical Services
Facility/equipment: Facility

Cite this

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title = "Cohort profile: The Scottish Research Register SHARE: A register of people interested in research participation linked to NHS datasets",

abstract = "Purpose: Recruitment to trials is often difficult. Many trials fail to meet recruitment targets resulting in under-powered 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 NHS 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 out-patient clinics and GP 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 to date. 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 datasets 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 SHARE will soon become the main source of health research recruitment in Scotland",

keywords = "Research Methods, Health Informatics, Research Subject Rectruitment",

author = "Brian McKinstry and Sullivan, {Francis M.} and Shobna Vasishta and Roma Armstrong and Janet Hanley and John Haughney and Sam Philip and Smith, {Blair H.} and Amanda Wood and Palmer, {Colin N. A.}",

note = "SHARE is funded by NHS Research Scotland (NRS) (http://www.nhsresearchscotland.org.uk/), a partnership of Scottish Health Boards and the Scottish Government Chief Scientist Office (CSO) that oversees governance and management of clinical research. Last year SHARE received just under £300,000 which is used to pay for ongoing recruitment, database maintenance and administration.",

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AU - Vasishta, Shobna

AU - Armstrong, Roma

AU - Hanley, Janet

AU - Haughney, John

AU - Philip, Sam

AU - Smith, Blair H.

AU - Wood, Amanda

AU - Palmer, Colin N. A.

N1 - SHARE is funded by NHS Research Scotland (NRS) (http://www.nhsresearchscotland.org.uk/), a partnership of Scottish Health Boards and the Scottish Government Chief Scientist Office (CSO) that oversees governance and management of clinical research. Last year SHARE received just under £300,000 which is used to pay for ongoing recruitment, database maintenance and administration.

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N2 - Purpose: Recruitment to trials is often difficult. Many trials fail to meet recruitment targets resulting in under-powered 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 NHS 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 out-patient clinics and GP 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 to date. 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 datasets 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 SHARE will soon become the main source of health research recruitment in Scotland

AB - Purpose: Recruitment to trials is often difficult. Many trials fail to meet recruitment targets resulting in under-powered 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 NHS 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 out-patient clinics and GP 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 to date. 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 datasets 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 SHARE will soon become the main source of health research recruitment in Scotland

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KW - Health Informatics

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SN - 2044-6055

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JO - BMJ Open

JF - BMJ Open

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ER -

Cohort profile: The Scottish Research Register SHARE: A register of people interested in research participation linked to NHS datasets

Abstract

Keywords

Access to Document

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Projects

The Scottish eHealth Informatics Research Centre (E-HIRCs) (Joint with Universities of Aberdeen, Glasgow, Edinburgh, Strathclyde, St Andrews & Leicester and ISD)

Equipment

Health Informatics Centre

Cite this