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)

Aileen Grant (Lead / Corresponding author), Jenny Ure, Donald J. Nicolson, Janet Hanley, Aziz Sheikh, Brian McKinstry, Frank Sullivan

    Research output: Contribution to journalArticle

    12 Citations (Scopus)

    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.
    Original languageEnglish
    Article number422
    Number of pages15
    JournalBMC Health Services Research
    Volume13
    DOIs
    Publication statusPublished - Oct 2013

    Fingerprint

    Health
    Research
    Research Personnel
    General Practice
    Delivery of Health Care
    Electronic Health Records
    Information Storage and Retrieval
    Confidentiality
    Workload
    Focus Groups
    General Practitioners
    Health Services
    Volunteers
    Research Design
    Interviews
    Population

    Keywords

    • Data Collection
    • Electronic Health Records
    • Female
    • Focus Groups
    • Humans
    • Interviews as Topic
    • Male
    • Patient Selection
    • Qualitative Research
    • Registries
    • Scotland
    • Volunteers

    Cite this

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    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)",
    abstract = "BackgroundDifficulties 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.MethodsWe 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.ResultsThe 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.ConclusionsThis 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.",
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    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). / Grant, Aileen (Lead / Corresponding author); Ure, Jenny; Nicolson, Donald J.; Hanley, Janet; Sheikh, Aziz; McKinstry, Brian; Sullivan, Frank.

    In: BMC Health Services Research, Vol. 13, 422, 10.2013.

    Research output: Contribution to journalArticle

    TY - JOUR

    T1 - Acceptability and perceived barriers and facilitators to creating a national research register to enable 'direct to patient' enrolment into research

    T2 - the Scottish Health Research Register (SHARE)

    AU - Grant, Aileen

    AU - Ure, Jenny

    AU - Nicolson, Donald J.

    AU - Hanley, Janet

    AU - Sheikh, Aziz

    AU - McKinstry, Brian

    AU - Sullivan, Frank

    PY - 2013/10

    Y1 - 2013/10

    N2 - BackgroundDifficulties 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.MethodsWe 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.ResultsThe 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.ConclusionsThis 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.

    AB - BackgroundDifficulties 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.MethodsWe 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.ResultsThe 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.ConclusionsThis 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.

    KW - Data Collection

    KW - Electronic Health Records

    KW - Female

    KW - Focus Groups

    KW - Humans

    KW - Interviews as Topic

    KW - Male

    KW - Patient Selection

    KW - Qualitative Research

    KW - Registries

    KW - Scotland

    KW - Volunteers

    U2 - 10.1186/1472-6963-13-422

    DO - 10.1186/1472-6963-13-422

    M3 - Article

    VL - 13

    JO - BMC Health Services Research

    JF - BMC Health Services Research

    SN - 1472-6963

    M1 - 422

    ER -