Ethics, consent and equality when engaging with stakeholder groups

							   SPOTlighting: Ethics, consent and equality when engaging with
                         stakeholder groups
SPOTlighting uses a detailed analysis of the commissioning cycle and delivery chain
to unpack a particular issue. An effective understanding of an issue can only be
achieved if quantitative data (facts and figures) are used in conjunction with qualitative
information (things like personal experiences, perceptions, opinions and case studies).
It focuses on the views and insights of stakeholders (strategic, frontline staff and
service users/residents in order to understand
   o the way that service commissioners and service providers identify the needs
        of service users
   o the way that service commissioners and service providers design and deliver
        a particular service.
It also prioritises
   o the actual quality and level of provision that service users actually experience


This desire to get ‘under the skin’ of an issue by engaging with stakeholder groups
means that it is vital to consider the wider ethical impact of your consultation upon
different stakeholder groups.


General issues

   1. Selection of participants
   2. Equality
   3. Health and safety of researchers and participants

Participant Specific Issues

   4.   Informed consent
   5.   Confidentiality
   6.   Sensitive issues
   7.   Management of stakeholder expectation
1. Selection of    o Will the study require the co-operation of a gatekeeper for initial access to the groups or individuals to be
    participants     recruited (e.g. students at school, members of self-help group, residents of nursing home)? Don’t assume that
                     a gatekeeper will automatically agree to work with you. People are (rightly) protective of their clients/users.
                   o You must be clear about how and why participants have been selected.



2. Equality        o Have you put in place a system to equality monitor the participants? Public authorities have a duty to comply
                     with the equality legislation see http://www.partnersinsalford.org/community-
                     engagement/toolkit/preparation/equality-and-the-law.htm for more information. As SPOTlighting is about public
                     service reform there is a duty to ensure that any service improvements do not detrimentally impact on a
                     particular group.
                   o Does your project require you to consult from a particular minority group? If so does your team have the right
                     skills and awareness to engage effectively.


3. Health and      o Have the risks that researchers might be exposed to been assessed and have actions been put in place to
Safety of            mitigate these risks?
researchers and    o For example if your consultation involve door-knocking in the evening are people working in teams. Who knows
participants         where interviewers are working? Do they have mobile phones, are people working in an unfamiliar area where
                     there is a known nuisance? If one-to-one interviews are used are there other people in the building etc
                   o If you are consulting under 16s or vulnerable people are people Criminal Records Bureau checked? Do
                     researchers have the skills and training to engage with these groups
4. Informed   o How will informed consent be obtained? When doing a relatively innocuous customer satisfaction survey a
Consent         verbal request is appropriate. Where research involves face to face interviews, focus groups, direct observation
                or similar methods of data collection, participants should normally be given or allowed to read or have read to
                them a participant information sheet (see example) and may be asked to sign a consent form. Asking
                people to be frank about the organisation they work for or asking for detailed personal information requires
                participants to trust in the process – see the section on confidentiality.
              o You must make explicit participants’ right not to answer particular questions and to withdraw from the study at
                any time.
              o If you need to engage with children and young people or vulnerable groups particular care needs to be taken.
                Young people aged 16-18 with sufficient understanding are able to give their full consent to participate in
                research independently of their parents and guardians. Children under 16 are able to give their full consent
                providing they have been counselled and do not wish to involve their parents and they have sufficient maturity
                to understand the nature, purpose and likely outcome of the proposed research. All information concerning
                your research needs to explained in language which is age appropriate or takes into account the participants
                cognitive abilities. If you need to consult with children and /or vulnerable groups it would be sensible to ask for
                advice of those with experience for example those who routinely work with these groups the Health and Social
                and the Children’s Services Directorates. Salford City Council’s Health and Social Care Directorate has
                guidance on research governance see http://intranet.salford.gov.uk/cssd/chcs-research-and-
                statistics/chscstats-rgfmain/chscstats-rgfroles.htm
5. Confidentiality   o What steps to be taken to ensure anonymity and confidentiality of data during collection, storage and
                       publication of any reports?
                     o Do you foresee using the information for any other purposes in the future? For example are you planning to
                       include the report in the Observatory?
                     o Will participants’ anonymity be compromised for example through a small sample size? (also remember there
                       might only be small numbers in particular minority groups so personal information might be unintentionally be
                       disclosed.)
                     o Remember participants from all stakeholder groups might have concerns about confidentiality. Asking
                       employees (senior or junior) to be frank about any issues/problems with the way in which a service is delivered
                       requires open mind and trust of the SPOTlight process. Some empoyers’ organisational cultures might be
                       closed and defensive, for someone to speak honestly they will require assurances about how anything they say
                       is going to be recorded and used. The same is true for when service users are interviewed, for example they
                       may be anxious that participation in SPOTlighting might mean that their case might be looked at differently.


6. Sensitive         o Will the study involve discussion of topics which the participants may find sensitive (e.g. sexual activity, drug
issues                 use, bullying)? Could the study induce psychological stress or anxiety or cause harm or negative
                       consequences beyond the risks encountered in normal life?
                     o During the research process participants might ask for support or researchers might be concerned about
                       information that has been disclosed to them. What support and referral systems are in place to respond to this
                       situation?


7. Management of     o Be mindful about what you say about the scope of your project. You must strike a balance between raising
stakeholder            stakeholder expectations and the likely deliverability of outcomes.
expectations         o Remember that service users participating in your project might have experienced poor service and think that
                       the researcher they are talking to is able to act as champion for their case. What steps have been taken to
                       ensure that any complaints are referred on?