Simon Anderson (Simon Anderson Consulting/AHRECS associate)
Liz Scowcroft (Head of Research & Evaluation, Samaritans UK)
How can third sector organisations develop research ethics processes and practices that are genuinely fit for purpose and not simply ‘transplanted’ from approaches developed elsewhere? A recent project conducted within Samaritans UK provides some potential pointers and, indeed, suggests that some of the challenges and possibilities of research ethics in the third sector may have wider relevance.
Samaritans’ vision is that fewer people die by suicide. It is best known for its telephone helpline, providing emotional support to anyone in emotional distress, struggling to cope, or at risk of suicide throughout the United Kingdom and Ireland (though it also provides support through a range of other channels). But the organisation also has a large research function, and undertakes, commissions and collaborates on research to inform its services, other activities, and policy and influencing work (with the ultimate aim of helping to save more lives). Not surprisingly, given the nature of the support the organisation provides and the populations it serves, there has long been a concern to ensure that such work is conducted ethically and, in particular, that the rights, dignity, welfare and wellbeing of participants are respected.
To that end, Samaritans has had a formal Research Ethics Policy in place since around 2009. The policy has been reviewed and updated several times, to reflect both changes in the external research environment (e.g. the increasing use of online methods) and in the volume and character of projects involving the organisation (e.g. a shift from largely student projects to ones directly commissioned by the organisation). It was not until 2018, however, that the organisation put in place an independent Samaritans Research Ethics Board (SREB) and associated processes. Prior to that, external research projects were reviewed for ethical issues by members of the research team but there was no independent scrutiny of projects conducted internally. When the new processes were established, a commitment was also made to review how they were working within three years. In 2021, Samaritans appointed Simon Anderson Consulting and AHRECS (who are now collaborating to offer human research ethics consultancy in the UK) to conduct that review.
The review found that Samaritans had put in place a set of arrangements that looked very like those one might find within academia. Indeed, much of the input into the SREB came from external academic experts, together with Samaritans volunteers. Perhaps not surprisingly, then, the system seemed to be working well for ‘traditional’ research projects which looked and behaved like those typically conducted within the higher education sector – for example, projects with well-defined methods, reasonably lengthy timescales and clear start and end points.
But as Samaritans has evolved, it has found itself increasingly involved in other kinds of ‘research-like’ activities – for example, user experience (‘Ux’) research aimed at understanding the thoughts, feelings and behaviours of the people who use a specific product or service, wider processes aimed at introducing a ‘lived experience’ perspective into the design or delivery of services, or work to inform campaigning or fundraising activity.
These projects often involved relatively short timelines, iterative, open-ended and dynamic ways of working, and staff and partner organisations (such as digital agencies) without previous experience of ethics review processes. The result? Widespread uncertainty about whether ethics approval was required or not, problems relating to timescales, and a sense that members of the research ethics board and applicants were talking different languages. There was also a concern about overly risk-averse decision-making, and especially the possibility that some groups (especially those of the more vulnerable) were effectively being prevented from participating in research – for example, by exclusion criteria based on experience of suicidal thoughts. As a result, the already hard-pressed Samaritans research team found itself in a difficult position – both in terms of workload/capacity (as everything had to flow through them), and because of the risk that ethics scrutiny became seen as something that they were imposing on the rest of the organisation.
Working closely with the research team and staff from elsewhere within the organisation, the review team developed and agreed a blueprint loosely based on AHRECS ‘resourcing reflective practice approach’. The main elements of that blueprint are outlined below.
Two key features were the commitment to a whole organisation approach and to proportional review.
By a whole organisation approach, we mean ensuring that research ethics is not seen as ‘owned by’ or the sole responsibility of the research team but (potentially) as part of everyone’s work. The definition of research was expanded to include ‘research-like’ activities of the kind carried out within digital and service development, marketing and communications, and staff from those teams were included in workshops to develop the new ethics approaches and subsequent training.
By proportional review, we mean an approach which:
- clearly determines whether a project requires formal ethics scrutiny in the first place;
- involves an agreed set of review pathways that are appropriate to the complexity and risk of the project involved; and
- uses a risk assessment approach to guide decision-making.
Some of those pathways are ‘lighter-touch’, especially where it can be demonstrated that a project is using already-agreed guidelines and approaches – for example, in relation to user testing of new digital resources.
But this is not a watering down of the commitment to research ethics; quite the opposite. By emphasising the relevance of research ethics even when it does not say research ‘on the tin’, the experience of Samaritans (and the third sector more generally) may have important lessons for other organisations, such as those health and higher education, who accord special ethical status to particular kinds of activities (typically those that meet the Frascati definition of research). The same organisations are frequently also engaged in ‘research-like’ activities (such as staff surveys, user experience research or service evaluation) which attract no ethics scrutiny, even if the experience of participants might, in other respects, be similar. In all organisational settings, research ethics needs to be fit for purpose. In other words, it needs to work for the specific types of work conducted in those settings. But above all, it needs to work for the people whose rights, interests and wellbeing need to be protected in the first place.
This post may be cited as:
Anderson, S. & Scowcroft, E (11 March 2022) Samaritans UK: Developing ‘fit for purpose’ research ethics processes within a large third sector organisation. Research Ethics Monthly. Retrieved from: https://ahrecs.com/samaritans-uk-developing-fit-for-purpose-research-ethics-processes-within-a-large-third-sector-organisation/