Ethics and consent

It is important that issues concerning ethics and consent are considered before any engagement activity takes place. This page is intended to help you identify and manage the impact of these issues. There are a number of general matters that need to be considered these include:-

Selection of participants
Equality
Health and safety of researchers and participants

There are also some participant specific questions that need careful consideration. These include:-

Informed consent
Confidentiality
Sensitive issues
Management of participant expectation

Each of these topics are dealt with in turn.

1. Selection of participants

Will the study require the co-operation of a gatekeeper for initial access to the groups or individuals to be 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.
You must be clear about how and why participants have been selected.

2. Equality

Have you put in place a system to equality monitor the participants? Public authorities have a duty to comply with the equality legislation see this page for some guidance. When engagement activities take place there is a duty to ensure that any activities or service improvements resulting from consultation do not detrimentally impact on a particular group.
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 Safety of researchers and participants

Have the risks that researchers might be exposed to been assessed and have actions been put in place to mitigate these risks?
For example if your consultation involve door-knocking in the evening are people working in teams. Who knows 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
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 Consent

How will informed consent be obtained? When doing a relatively innocuous customer satisfaction survey a 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 (information sheet used for SPOTlighting) and may be asked to sign a consent form (consent form used for SPOTlighting). 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.
You must make explicit participants’ right not to answer particular questions and to withdraw from the study at any time.
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 the City Council's intranet on research governance. (this link is only available to Council web users).

5. Confidentiality

What steps to be taken to ensure anonymity and confidentiality of data during collection, storage and publication of any reports?
Do you foresee using the information for any other purposes in the future? For example are you planning to include the report in the Salford Observatory?
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.)
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 engagement process. Some employers’ 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 engagement might mean that their case might be looked at differently.

6. Sensitive issues

Will the study involve discussion of topics which the participants may find sensitive (e.g. sexual activity, drug use, bullying)? Could the study induce psychological stress or anxiety or cause harm or negative consequences beyond the risks encountered in normal life?
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 stakeholder expectations

Be mindful about what you say about the scope of your project. You must strike a balance between raising stakeholder expectations and the likely deliverability of outcomes.
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?