Samaritans attaches considerable importance to the maintenance of high ethical standards and best practice in all research projects conducted by Samaritans staff and volunteers, or on behalf of the organisation by external research agencies and consultants. For this reason, any work which involves contacting vulnerable people, current or past callers, volunteers and members of the public requires due consideration regarding ethical best practice and data protection legislation.
It is important to note that Samaritans research activity is separate from the provision of emotional support. It is thus governed by the Research Ethics Policy, to align with professional and ethical standards in research, and not by Samaritans’ operational or service policies.
1. Application of the policy
1.1. Research that involves contacting and collating information from current or past callers, volunteers and members of the public carried out by;
1.1.1. Samaritans staff or volunteers
1.1.2. External researchers that are supported or commissioned by Samaritans to carry out research either in partnership with Samaritans or on their behalf
1.2. Research that involves secondary analysis of individual-level data sources, including Samaritans operational and/or eLog data carried out by;
1.2.1. Samaritans staff or volunteers
1.2.2 External researchers that are supported or commissioned by Samaritans to conduct secondary data analysis either in partnership with Samaritans or on their behalf
1.3. Monitoring of activity and operations carried out by staff and volunteers must adhere to Samaritans Confidentiality Policy (see appendix 1) and Data Protection Guidelines (see SamaritansNet), but does not have to adhere to this Research Ethics policy, as this is not classified as research. Included under this heading are (for example):
1.3.1. Operational caller support and management information
1.3.2. Operational telephony and eLog monitoring data
1.3.3. Quality and complaints monitoring data
1.3.4. Data monitoring for internal projects.
2. Ensuring the well-being of participants
2.1. The physical, social and psychological well-being of participants must not be adversely affected by participating in research. If there is a risk of distress to the participant due to the nature of the research and how it is being conducted, then sufficient precautions should be taken to minimise this risk and support provided should the need arise.
2.2. All participants must be able to understand any information provided so that they can make an informed choice about participation. Participants must be able to provide informed consent and fit the following criteria:
2.2.1. The motivations of participants for taking part in the research are varied, and participants should be advised that research is distinct from emotional support and should be dissuaded from using the research process for these purposes.
2.2.2. Participants should not be at risk of serious harm at the recruitment stage or data collection stage of the research.
2.2.3. Participants should be made aware of the levels of confidentiality and anonymity related to the project, and what this means in practice and any wider implications this may have.
2.3. Participants must be provided with information about appropriate support organisations they can use if they experience distress during or after taking part in research. If a researcher is concerned about the well-being of a participant, signposting or referrals processes must be in place for the researcher to adopt.
2.4. Researchers must develop inclusion and exclusion criteria to help define the sample. They also need to address several key questions when embarking on a new research project. These include:
- What are the possible risks and costs to participants, in terms of time, inconvenience, distress, or intrusions on privacy?
- How will participants be made to feel comfortable to share their experiences with the researcher? How will a relationship of trust be established?
- How will the project deal with participants who become distressed, who wish to withdraw from the project, or who disclose risk of serious harm to themselves or others?
- What are the implications of paying or rewarding participants?
- What issues are raised by informed consent? Is any additional information or advice needed?
- Is the research sensitive to any current needs and issues relevant to the research population?
- Are there any concerns arising from the nature of the research or subject matter? For example, research on suicide-related internet usage may need to consider what content or information on suicide is provided to participants; research related to suicide methods must consider what detail related to methods should be excluded from publications.
- Have diversity and inclusion issues been considered and addressed?
- Are the findings of the research to be published in formats that are accessible to research participants and, if necessary, wider social groups?
- What consideration has been given to these key questions when making decisions about research questions, data collection, or the interpretation and dissemination of research findings?
2.5. Any surveys sent to research participants from Samaritans must include introductory text that explains our approach to research ethics and data protection (see appendix 2).
3. Informed consent
3.1. Participants must be fully informed about the project before agreeing to take part. The information should be written and presented in an accessible format (information sheet, website), enabling participants to fully understand what is expected of them, the amount of time they will have to commit and any potential negative or distressing outcomes. Participants must be able to ask any additional questions they may have before providing consent, to ensure they are able to make an informed choice on whether they want to take part in the study.
3.2. Participants must be aware that it is their choice whether they take part, and must not feel pressured to participate. Participants must be assured that if they agree to take part, or not, this will not affect future support available from Samaritans.
3.3. Participants must be aware that they can withdraw at any stage, without needing to give a reason.
3.4. Participants must provide written, verbal or suitable evidence of consent that they agree to take part in the research. If verbal consent is obtained this needs to be documented by the person taking consent and stored in the same way as other records of consent. (see appendix 3 for an example of a consent form).
3.5. If the research sample comprises of participants who are aged under 16 years, the parents/carers of the participants should be fully informed and provide written consent for their child to take part. Individual written consent of the young person is also required. Exceptions may arise where, for example, a school may act in loco parentis and provide written permission for all pupils to participate though provide parents with the choice of ‘opting-out’.
3.6. All research that involves children and young people must adhere to any legislative requirements regarding child protection in the country in which it is carried out. For cross-nation projects involving vulnerable populations and participants who may need on-going support, it may be necessary to gather independent and ethical advice if more than one legal framework surrounding data protection or child protection applies.
3.7. Informed consent is an on-going process, especially when participants are service users with mental health problems, memory problems, or a learning difficulty. Recalling information may be difficult for some participants and therefore it is important to reaffirm key information relevant to the research in a clear and accessible way on regular occasions, and agree informed consent at all data collections stages of the research.
4. Confidentiality and anonymity
4.1. Participants must be fully informed about the level of confidentiality and anonymity possible for the project they are taking part in. A full explanation of what this means in practice should be given. For example:
- A participant involved in a case study will not be able to maintain confidentiality and anonymity if they agree to be involved in a media event. The making of audio, video or photographic records of research participants can also remove confidentiality and anonymity, requiring these participants to provide informed consent in relation to the making of the material and how it will be accessed and used.
- For group work, clarification is required that any information shared must remain confidential within that group and must not be passed on to any third party. It is essential to inform group participants about the identities of those who will be attending the group so they are aware who they will be discussing and sharing information with, e.g. staff and third parties.
4.2. Confidential information can only be passed on to relevant parties if a participant has disclosed that they or someone else is at risk of serious harm (see section 7), if they have given their consent for information to be passed on, or if the information is required and justified by law.
4.3. Participants recruited to take part in a research study during their contact with Samaritans service must be informed about Samaritans safeguarding policy and the impact this has on confidentiality and anonymity. Caller contact details for research purposes should only be obtained only at the end of the contact to avoid implications for the safeguarding process.
5. Use and dissemination of information
5.1. Participants must be fully informed that the information they provide is for the purposes of the research only, and how the information will be used, e.g. publications, training events, campaign materials.
5.2. The researcher should only collect information that is relevant to the purposes of the research, or as is required by law.
5.3. Participants must be informed about the types of feedback they can receive on the findings of the research. All participants who request feedback must receive it, either individually or through a gatekeeper organisation.
5.4. Researchers should fully report research procedures, results, and analysis methods accurately and in sufficient detail so that they are accessible to readers and can be replicated.
5.5. Publications from the project must maintain the confidentiality and anonymity of all participants, except in cases where participants have granted written permission for their identity to be disclosed in the interests of the research.
5.6. Acknowledgement of those involved in the project can be given as appropriate, e.g. external Research teams, staff and volunteers, Samaritans. If anyone involved in the project is named and therefore identified in the acknowledgements, agreement is required beforehand.
5.7. All evidence used to inform the development of the project must be suitably referenced.
5.8. Any papers or publications produced from the research project must be agreed with and signed off by the appropriate Head of Team before submitted for publication by an external agency, or published by Samaritans.
5.9. Publications must clearly define the research approach, methods, analytical tools and results in sufficient detail that they are understandable to any person who accesses the research, and allow other researchers to replicate their approach.
5.10. Disseminated information must not be false or misleading as this may negatively affect the public image of the charity. Small-scale or local research cannot be representative of Samaritans, and dissemination of findings, the limitations of the research, how the research can be used, and any implications of the evidence for Samaritans must be considered.
6. Data protection
6.1. All electronic data collected during the research must be stored securely in password-protected files, with participant identifiable information stored separately from research data though linked by a unique identifier. Hardcopy materials containing personal or sensitive information must be secured in a locked cabinet. Research data should only be accessible to designated researchers and for the purposes of the research.
6.2. Any data shared within or between Samaritans and branches, or external researchers and locations, must be transferred securely. This includes the use of signed courier services (for transport of data with no identifiable information), secure spaces on Samaritans intranet, or encrypted files sent by email, or transferred in person by the researcher.
6.3. Only information that is relevant to the purposes of the project, or required by law, should be collected and stored. Data may also be stored to form the basis of academic publications for up to 5 years.
6.4. Data should only be kept for as long as they are of benefit to the project, or in the interest of participants. Data that are no longer required should be appropriately deleted or destroyed.
6.5. Where appropriate, a data processing agreement must be in place with any external Research teams that are supported or commissioned by Samaritans to carry out research on their behalf.
6.6. Participants should be informed that, in accordance with the Data Protection Act (1998), they have a right to see any information that Samaritans holds in relation to them. However, participants must be made aware that Samaritans may hold data that is not identifiable and therefore may not be able to provide data, if requested.
7. Disclosure of risk of ‘serious harm’
Serious harm can refer to situations such as being at risk of, or experiencing, physical, sexual, mental or emotional abuse, or poor emotional and mental well-being. However, in research projects that are exploring the experiences of vulnerable groups, ‘serious harm’ can be hard to define and apply in practice. Therefore, serious harm’ must be clearly defined for each research project based on the study sample and design and provided to the participant.
7.1. Process for managing disclosures of ‘serious harm’ must be developed based on the study sample and design. For example, face to face data collection methods will enable an immediate response to a disclosure compared to online data collection methods which may not be monitored at all times.
7.2. Participants must be informed that, if they disclose that they or someone else is at risk of serious harm, this information may not remain confidential.
7.3. Participants who disclose they or someone else are at risk of serious harm will be offered support either by Samaritans or referred to another organisation by the researcher or via Samaritans safeguarding process. The nature and specifics of support offered must be determined by the researcher, and based on the disclosure made and the specifics of the research project (see appendix 4).
7.4. Where a disclosure of serious harm is made by a participant, the researcher must inform the participant what the next steps will be, and whether the disclosure will be referred to a third party. Ideally consent should be sought from the participant before any information is passed on to a third party. However, it should be noted that in some cases of serious harm where the researcher has a duty of care e.g. disclosure of abuse of a minor, they may have to pass on the research participants’ details and disclosed information to a third party without consent – although this would always be the last resort, as the participants’ permission would be sought first. The researcher must also inform their manager and discuss the most appropriate way to manage the disclosure (see appendix 4).
7.5. There may be times when a research participant is not considered at risk of serious harm, but the researcher is concerned about their well-being. In such circumstances, the researcher should ensure that the participant receives information about organisations that can provide appropriate support. With the participant’s permission, researchers may also be able to use Samaritans third party referral process when appropriate.
8. Expenses and Payments
8.1. Participants should receive reimbursement for reasonable expenses incurred during a research project, e.g. travel expenses.
8.2. A decision to provide payments for participation, and how much, will depend on funds available. Payments would usually be made in the form of shopping vouchers (avoids tax and benefit implications for participants).
8.3. The researcher responsible for the project needs to assess whether it is appropriate to pay participants for their time and contribution to the research, and any implications this may have on recruitment.
8.4. It may be appropriate to use an incentive to take part in research, such as an entry into a prize draw, or reward an organisation for their help with the research, e.g. resources for an organisation’s library.
8.5. Researchers must not accept gifts (in money or in kind) from funders, participants or stakeholders, as this can undermine impartiality.
9. Researcher Conduct
9.1. Evidence, data, findings or conclusions from the project must never be fabricated, falsified or misrepresented.
9.2. Researchers should act in such a way that they do not jeopardise future research opportunities, the public standing of the field or the reputation of Samaritans.
9.3. Researchers employed by Samaritans or based at an external institution or organisation must ensure high levels of professional conduct. This refers to how researchers manage their own behaviour, and how they manage and present research data. They must also be sufficiently experienced in carrying out research with vulnerable people, and trained to recognise and respond to distress and risk if it arises.
9.4. Researchers should not have potential financial or organisational conflicts of interest in relation to possible findings from the research.
10.1. Research participants will be informed about the complaints process. A participant who has concerns or a complaint should contact the Principal Investigator responsible for the project. Contact details for the researcher should be provided to the participant on a resource, such as the Participant Information Sheet.
10.2. If participants are recruited via Samaritans, any complaints from a participant must be discussed with the appropriate Head of Team at Samaritans Central Office.
10.3. A research participant who has a complaint about the researcher responsible for the project should be referred to the appropriate Head of Team at Samaritans Central Office.
10.4. Complaints by members of the public about Samaritans research projects should be referred to the appropriate Head of Team at Samaritans Central Office.
10.5. Complaints by funders should be directed in the first instance to the appropriate Head of Team at Samaritans Central Office. If additional input is needed, this must be referred to an Executive Director at Samaritans Central Office.
10.6. Details of the complainant and the complaint will be recorded, additional information sought if necessary, and a response made by either the appropriate Head of Team or Executive Director at Samaritans Central Office.
11. Internet Mediated Research (IMR)
11.1. Though most elements of research ethics apply to all research, IMR projects may require special consideration by ethics committees. This must be done on a project by project basis.
11.2. Researchers must determine whether IMR is a suitable approach for the purposes of the research and for the sample population being studied. One limitation of IMR is that the researcher has less control than in conventional research over who takes part and in what kind of environment.
11.3. When recruiting participants for IMR through email, researchers need to consider any risk due to the use of non-secure emails and legislation regarding unsolicited ‘spam’ emails.
11.4. For observational studies (e.g. observing behaviour and use of chat rooms) researchers must consider participants’ expectations of privacy, levels of deception, whether observing is intrusive, and whether using these data could cause harm to participants who are not aware that their online behaviour is being observed.
11.5. Researchers need to consider risk to confidentiality, as it is not possible to guarantee absolute confidentiality to IMR participants (the researcher cannot control the networks). For example, email content may be stored by web hosting companies.
11.6. Researchers need to inform IMR participants how the data they provide is electronically stored and transported. Additionally, if participants post any information online for the purposes of the research, they must be informed that this could be seen by the public via search engines. Unless a participant has provided consent, researchers need to consider how reporting any data obtained from the internet could pose a threat to a participant’s privacy, e.g. using a participant quote that could be traced through a search engine.
11.7. Anonymity must be applied to a website address, discussion forum, and pseudonyms used by participants.
11.8. Researchers need to consider whether IMR is suitable for participants who require permission from a parent/carer to participate, e.g. those aged under 16 years. This will depend on the nature of the research and the complexity of gaining dual consent from both the participant and the parent/carer.
11.9. Researchers must provide an accessible information sheet that the participant can access (e.g. online), which outlines the study, how long their participation will take and any costs incurred if using internet access, especially via smartphones, that will enable them to provide informed consent.
11.10. Researchers must ensure withdrawal from research is clear to participants, e.g. by providing the researchers’ contact details, issuing ID codes to enable data to be identified and withdrawn, or providing participants with a cut-off date where all data will be anonymised and therefore untraceable.
11.11. Researchers must provide IMR participants with a debrief page to ensure they are clear on key issues and where they can access support, if required (see appendix 5).
11.12. Researchers should consider how participants who withdraw from the research can receive a debrief page and how accessible they are to respond to communications from these participants.
11.13. Researchers need to consider how they will provide feedback and disseminate the research findings to IMR participants. Information on how participants can request or access feedback must be provided.
11.14. Researchers who use any sensitive materials that could cause significant distress to participants must be cautious when using IMR. Researchers who do not have physical contact with participants may be unable to assess a situation accurately and provide support to participants when needed.
11.15. Researchers carrying out IMR must ensure that their professional and personal online boundaries are maintained. For example, researchers are advised to only use work emails and not use any personal types of online contact.
11.16. Any research using social media data must review key questions and justify the approach being used in the research;
a) If ethical approval is required, is the ethics committee suitably skilled in social media research?
b) Are the researchers competent and skilled in social media research projects?
b) Is the data considered to be ‘public’ or ‘private’ and what implications may this have?
c) How will you maintain anonymity of the social media users?
d) Do you need to gain informed consent from the social media users?
e) Are there any risks of harm to the social media users that need to be considered?
11.17. Researchers must review the site owners’ privacy statement and how users have agreed for their data to be used. Researchers must also inform site owners if the research is going to use publicly available data on their platform. This can be on an opt-out basis.
12. Process and Organisational Matters
12.1. All Samaritans research applications and projects are considered by the Research team at Samaritans Central Office to ensure they adhere to the Research Ethics Policy and will not put the organisation at any risk.
12.2. The Policy and Research Committee (PRC) will monitor applications for research projects that require ethical approval by Samaritans Research Ethics Board (SREB), to ensure that research is being approved and completed.
12.2. Where a project is being designed internally by the Research team in Samaritans Central Office, or by volunteers in a branch, the research project team must complete an ethics from and evidence how the project meets the requirements of Samaritans Research Ethics Policy.
12.3. Samaritans branches must ensure that they have consulted with Samaritans Research team in Samaritans Central Office before supporting or commissioning any research. This will enable the Research team to provide advice and support in gaining ethical approval.
12.4. All Samaritans researchers and any external researchers working with or for Samaritans are subject to checks by the Disclosure and Barring Service (DBS).
12.5. Samaritans is committed to ensuring the personal safety of researchers. It will encourage the use of mobile phones and identity cards, and the use of a monitoring system for checking researcher whereabouts and activities.
12.6. A full copy of the ethics policy must be issued to external agencies (including research institutions, universities and market research companies) undertaking commissioned research on behalf of Samaritans, prior to the commencement of work. External agencies must also have their own ethics policy and these should be reviewed by Samaritans prior to contract. External institutions or organisations with an Ethics Committee must produce evidence of ethical approval.
12.7. Adherence to the ethics policy will be required as a key component of the standard service-level agreement between parties. Standard service-level agreements covering ownership of information, copyright and citation privileges, access to data, data protection, and publication needs are required prior to the commencement of work conducted by any external agency. Adherence to Samaritans’ ethics policy will be required as a key component of the standard service-level agreement between parties.
12.8. Samaritans will review this policy every 3-4 years unless requested sooner by Samaritans Research team, Executive Leadership Team, Policy and Research Committee and/or Board of Trustees.
12.9. In instances where Samaritans partners with an external research body to undertake research, it might be requested to submit research data to the UK Data Archive. In instances where this occurs, a decision needs to be made about how/whether to proceed if this is a requirement, on a case by case basis. If archiving data is a requirement of a study, Samaritans should not enter into an agreement or contract with an external research organisation until a risk assessment is carried out.
12.10. If recruiting participants for research via Samaritans email services, researchers must adhere to an agreed process (see appendix 6).
12.11. Projects addressing sensitive topics and/or including Samaritans callers or potential callers must be reviewed by Samaritans Research team and Samaritans Research Ethics Board.