There is an increasing expectation that health research should be co-produced with members of the public, from research design to research conduct and dissemination. However, little attention has yet been paid to the need for duty of care towards lay representatives active in research. Researcher engagement with research participants is overseen by ethics committees and researchers themselves are protected by legislation governing safety in the workplace, members of the public do not benefit from such protections. We therefore organised a workshop at the 17th annual Health Services Research (HSR) UK Conference in Oxford to discuss the challenges around duty of care in research co-production with members of the public. “We” are a public contributor with significant experience in advising researchers and funders in health research, and a medical sociologist with a keen interest in public involvement in research.

Our starting point was that duty of care should be a central concept in any research activity involving members of the public. However, it is difficult to pin down what precisely we mean by ‘duty of care’ in the context of co-production. Duty of care typically refers to the obligations of individuals to act towards others in a certain way, in accordance with certain moral or legal standards, to protect them from potential harm. Yet, ‘harm’ in itself is a multifaceted concept. It can be physical, but it can also manifest as emotional harm, resulting, for example, from discrimination, triggering past traumas, or feeling unheard. This means that research need to carefully consider whom they are working with and under what circumstances in order to prevent harm and ensure adequate duty of care.

The workshop was attended by over 30 participants, bringing together both researchers and public contributors. We developed three scenarios for workshop participants to work on in small groups to reflect on what duty of care could and should look like in these cases. One scenario invited participants to imagine they were working on a project seeking to understand the reasons for a higher number of suicides in rural areas and how they would bring together a group of members of the public to advise on study design and data analysis. The second scenario asked participants to chair a funding panel awarding fellowships, which included two members of the public. The third scenario invited participants to think about how to bring together a panel of members of the public to oversee a five-year programme of work to evaluate policies in health and social care. They were asked to specifically consider how to sustain duty of care over time.

Workshop participants were encouraged to bring their own examples and reflect on their past practices. Participants identified a wide rang of issues that they felt important to consider to ensure duty of care in the process of research co-production:

1. Provide as much information as possible to public contributors about the research, the activities they will be asked to participate in, and the extent to which they will be able to impact the research process. Transparency and honesty form the basis for informed consent when inviting members of the public to work on research.
2. Ensure clear signposting toward counselling services.
3. Consider people’s personal situation and commitments when scheduling meetings. Accommodating people’s other responsibilities increases the inclusivity of research participation.
4. Be realistic about the boundaries of duty of care and partnering with organisations that can intervene where researchers are limited in their capacity to support public members.
5. Dedicate time to discuss how to work best together, holding separate meetings to address any issues.
6. Help people recognise the skills they are using or gaining as a result of their participation in research activities.
7. Keep people updated about the impact of their work on the research.
8. Avoid assumptions, always ask about the needs and preferences for access and participation, and determine the best ways to meet these. Do not assume people’s expertise or experiences. Following the engagement, seek feedback.
9. Ensure access to inclusion and participation. Can everyone write? Can everyone write using post-it notes? What about hearing needs? How can we make the environment inclusive? And so on.

The final point was seen to be central to duty of care and should be the starting point for ensuring duty of care. It accounts for the context in which such duty occurs and can be executed. However, workshop participants noted just how much can go wrong in the work that researchers do with members of the public, potentially violating the duty of care. For example, planning a group exercise that involves writing on post-it notes may exclude participants unable to engage, leaving them feeling disregarded. Often, those affected negatively are left with the consequences of what went wrong without being able to talk through what went wrong. So it is important to understand how to reduce the risk of marginalisation and exclusion by ensuring that participants’ needs and preferences are understood and acted upon ahead of the event. This is best approached at recruitment stage by asking those volunteering as public contributors about any specific requirements they might have. A potential example to follow is the National Institute for Health and Care Research (NIHR) Disability Framework which describes NIHR’s commitment to disability inclusion. The framework acknowledges that approaches to adjustments need to be co-developed with those who need them. It encourages feedback from disabled people to bring examples of good practice and measure success. However, more is needed to ensure that that public contributors are supported and that we have the space for reflection on how we co-produce in research.