Ethical Review of Adult Social Care Research: - PowerPoint PPT Presentation

1 / 23
About This Presentation

Ethical Review of Adult Social Care Research:


Title: Social Care Research Ethics Committee Author: Barbara Cuddon Last modified by: DeborahR Created Date: 6/26/2009 3:04:08 PM Document presentation format – PowerPoint PPT presentation

Number of Views:64
Avg rating:3.0/5.0
Slides: 24
Provided by: BarbaraC166


Transcript and Presenter's Notes

Title: Ethical Review of Adult Social Care Research:

  • Ethical Review of Adult Social Care Research
  • Practice issues resources
  • Deborah Rutter (SCIE)

What lies within ...
  • Sources of review for social care research
  • Social Care REC
  • Research governance ethics issues
  • For Social Care REC
  • For social care researchers
  • Future developments

Sources of review for research on humans
  • University RECs (URECs) most accessible
    service for academic researchers students
  • NRES RECs for NHS and HSC studies
  • (includes independent AAPEC Committees Social
    Care REC)
  • increasing remit for NRES
  • but reduced number of NRES RECs (200 down to
    99 in July 2010) reduced differentiation

  • More studies per REC more pressure on volunteer
  • Demand for rapid reviews (proportionate)
  • Double jeopardy from local RECs attached to
    institutions has gone ...
  • ... but RD Depts have replaced some of this
    scrutiny in sometimes less transparent ways
  • NRES has tried to make itself lean in
    anticipation of Rawlins (AcMS) Review
    government cuts
  • HEI URECs may still feel
  • marginalised

Background to Social Care REC
  • Following a lengthy period of consultation with
    stakeholders in the social care sector, the
    Department of Health asked SCIE to appoint a new
    national Social Care Research Ethics Committee
  • Appointing Authority SCIE has no place on REC so
    no conflict of interest

The case for a social care REC
  • Views from the social care community
  • Social work social services practice research
  • Social care research governance (DH)
  • Social science research governance (ESRC)
  • 2001-2006 Jan Pahl reports
  • Gaps in provision
  • Inappropriately resourced provision

Social Care Research Ethics Committee
  • Funded by Department of Health (no contribution
    from DCSF, so adults only)
  • Operates within the framework (audit SOPs)
    funding of National Research Ethics Service (NRES
    was part of now abolished National Patient
    Safety Agency)
  • IRAS form version redesigned (within limits) to
    include SC REC
  • First monthly meeting held in June 2009

Social Care Research Ethics Committee
  • Fifteen members appointed in December 2008
    through open advertisement
  • Membership reflects the social care context and
    includes researchers, academics, ethicists plus
    providers, users and carers of social care
  • REC complements, NOT replaces, other RECS by
    addressing gaps in provision
  • Takes on specialist roles
  • University RECs and NHS Healthcare RECs will
    continue to review social care proposals where

Social Care REC primary responsibility ( under
  • 2.2 The purpose of a Research Ethics Committee
    in reviewing the proposed study
  • is to protect the dignity, rights, safety and
    well-being of all actual or potential
  • research participants. It shares this role and
    responsibility with others, as
  • described in the Research Governance Framework
    for Health and Social
  • Care.
  • 2.3 RECs are responsible for acting primarily in
    the interest of potential research
  • participants and concerned communities, but they
    should also take into
  • account the interests, needs and safety of
    researchers who are trying to
  • undertake research of good quality. However, the
    goals of research and
  • researchers, while important, should always be
    secondary to the dignity,
  • rights, safety, and well-being of the research
    participants. GAfREC 2001 (DH)

Social Care Research Ethics Committee
  • Some key Principles from Securing Ethics
    Review see
  • 1. No investigator should have to seek ethics
    review from more than one REC.
  • 2. Social care community accepts a wider
    definition of what constitutes research e.g. most
    service evaluations would be accepted as suitable
    for review by the SC REC. Chief investigator
    sponsor decide whether to seek REC review (except
    if MCA applies).
  • 3. Different concept of risk or potential
    damage from that pertaining to invasive health

What Social Care REC reviews
  • 1. All studies should concern adults. SC REC has
    no authority to review studies concerning
    childrens social care services, although the REC
    has given opinions on inter-generational
    studies (with NRES approval).
  • 2. Social care studies funded by the Department
    of Health, including Information Centre surveys
    NIHR social care studies, primarily School for
    Social Care Research

  • 3. Social care research that may involve adults
    lacking mental capacity to consent to
    involvement. SC REC is flagged ( trained) to
    review Mental Capacity Act research
  • 4. Social care research that involves sites in
    England and another UK country. Informal
    agreement with Wales, NI and Scotland to avoid
    double-handling of such research (pending new
    governance arrangements)

  • 5. Studies where investigators do not have access
    to other review systems e.g. private sector
    contractors not affiliated to universities,
    especially those carrying out government sector
    contracts social care research led by
    service-user researchers
  • 6. Councils with Social Services responsibilities
    own account research with ethical issues they
    consider substantial

  • 7. Studies of integrated services (health and
    social care), or multi-site studies involving
    both health and social care contexts, provided
    there is no clinical intervention or change to
    clinical practice involved. (Again, we tend to
    consult policy advisors at NRES.)
  • NOT student research, unless it concerns Mental
    Capacity Act

Further guidance on applications
  • What is social care research? Can we recognise it
    by context?
  • Research with social care staff/students/service
  • Research in care homes, and domiciliary care
    vital but difficult, often with people lacking
  • Personalisation, self-funding contexts
  • How is research defined?
  • The Mental Capacity Act research guidance
  • Access permission from host organisations is
    not in gift of any REC needs to be negotiated
    with host organisations
  • Access to NHS staff may require clearance with
    RD offices (reported to be non-standardised,
    demanding, over-zealous given nature of research)
  • ADASS review of design procedure for 4 LAs
  • Research Register for Social Care
  • Visit

Common ethical issues in social care applications
(REC concerns)
  • Who can access (first contact) the social care
    service user? Providers can researchers cannot
    (need to opt in). Process often inadequately
  • The questions are they offensive? Are the
    questions (survey or interview) answerable?
  • Review by service users, piloting with
    recipients, desirable.
  • Introductory letter, outlining purpose, with full
    contact details (for opt-out of reminders
  • Is the follow-up reasonable? Or harrassment? Are
    response rates an ethical concern?

  • Payment (inducement or reward? Impact on benefit
  • Exclusion of people from minority backgrounds
    hard to reach service drop-outs refusers
  • Very poor understanding of Mental Capacity Act
    (use of proxies?)
  • Researchers need to have a protocol for following
    up notification of adult abuse. The respondent
    should know what would happen (eg brief
    explanation in covering letter).
  • Quantitative material anonymising data.
  • Plan for dissemination is it likely the
    respondents will be interested in results?

Research applicant concerns
  • The IRAS form online submission
  • The time it takes lt60 days from submission to
    opinion (nearer 30 for SC REC, clock stops while
    applicant responds)
  • Ethics review impinging on design/methods
  • Consistency of decisionmaking by RECs
  • Incremental (qualitative) research how to
    describe for the review?
  • Uncertainty over what requires ethics review
    what should require it how to avoid it!
  • Double jeopardy (URECs, ADASS, etc)

General feedback on REC system
  • Academy of Social Sciences submission to Rawlins
  • Favour single regulator for HSC (only) with
    broader philosophy/culture (less medical, more
    social) integrated with NHS permissions
  • Valued new Social Care REC
  • More use should be made of HEI RECs
  • NHS requirements remain a key problem,
    discouraging inter-disciplinary work
  • Feedback from SC REC customer survey
  • Broadly positive, esp. coordinator support
  • Concern about re-design over-
  • stepping boundaries of ethical concerns

Mental capacity issues
  • Act requires research allowed under MCA to
    concern treatment or care of person unable to
    consent (ALC)
  • Act requires that research cannot be conducted as
    effectively with people who have capacity
  • Inability to understand/recall purpose content
    of research (the test for valid consent) almost
    certainly suggests lack of capacity to understand
    questions (you cannot use carers as proxies)
  • Those who lose capacity during research? We are
    trying to get the IRAS form to provide a suitable
    option for single contact interview studies.
  • Lack of clarity where consultee is also informant
    in capacity of carer

Forthcoming developments
  • New harmonised GAfREC (to include SC REC, URECs)
    may include easier access to NHS staff as
    participants will include MCA and Proportionate
  • New Standard Operating Procedures (some SC REC
  • Rawlins Review to report
  • A new home for National Research Ethics Service
  • An ethics review facility for childrens social
    care and education???

Booking and Queries
  • Contact
  • Barbara Cuddon, SCREC Coordinator
  • Social Care Institute for Excellence
  • Goldings House
  • 2 Hays Lane
  • London SE1 2HB
  • Tel 0207 089 6899
  • See flowchart, dates, guidance at

(No Transcript)
Write a Comment
User Comments (0)