Creating a safe space for patients and public in research

When involving patients and the public in the design and delivery of health and social care research, we often refer to the importance of creating a “safe space”. But what do we mean? Why is it important in patient and public involvement (PPI)? And how do we do it?

At its simplest, a safe space refers to an environment in which people do not feel physically and psychologically threatened, a space in which they don’t feel discriminated against or judged, a space in which they can be their authentic selves. This has resonance in the world of patient and public involvement. We want people to feel able to express their views on a piece of research. This could be the research question, research instruments such as a questionnaire or interview topic guide, a product that is being co-created or dissemination materials. When people don’t feel safe to express their views, their involvement becomes tokenistic rather than meaningful.

However, a power dynamic is often at play, albeit usually inadvertent, between researchers on the one hand and patients and the public on the other. I will exaggerate to emphasise the point, but the former are usually comfortable and confident in the culture of research and academia, have undergone training in research methods, and are used to speaking in meetings and on committees. Patients and public who are invited into this world may be unfamiliar with its norms and rules and feel an expectation to “perform”.

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It is often the patient and public involvement lead, the person with overall responsibility for overseeing and managing PPI plans and activities in research, who plays a key role in creating this safe space. 

So, what can the PPI lead do to make research meetings a safe space for all participants?

1. Create a ‘ways of working’ document with the patients and public and researchers 

This guiding document is not a set of rules but rather outlines the tone of the project and expectations about behaviour that patients, members of the public and researchers agree to and which can be reiterated at the start of every research project meeting. It sets out the environment in which we, as healthcare researchers, want to work. It can cover guidelines such as: “Listen to all viewpoints without interrupting and respect the views of others” and “Disagree agreeably – people should feel that this is a safe space in which to disagree and challenge respectfully”. ​

2. Build in time for social interaction

Rather than launching straight into work, it can be useful to begin the meeting with an opportunity for researchers, patients and members of the public to engage in everyday chat. The lead can run point on this. Engage people in conversations about what they did at the weekend or what their hobbies are. It provides a chance for the researchers to step outside their roles and start to build relationships and trust. In doing so, researchers start to create a space where patients and the public will feel comfortable.

3. Build in opportunities for the PPI lead to engage with both researchers and public contributors 

The PPI lead could chair meetings that involve both researchers and the public contributors. The role faces both ways in that while part of the research team, he or she is also an advocate for the public contributors. It is likely that, because of their role, they will have already built up a degree of rapport and trust with the public contributors. They are also likely to be experienced in chairing and sensitive to when public contributor input is absent and adjust the meeting accordingly. 

4. Hold reflective sessions throughout the project 

The purpose of reflective sessions, led by the PPI lead, which could be with just the public contributors or with everybody involved in the research, is to consider how well the public involvement plans and activities are working and to identify what can be improved. Part of these reflective sessions is exploring the extent to which public contributors can voice an opinion, how comfortable people are in expressing a view and the extent to which they feel listened to and respected. The lessons from these sessions can be used to inform future meetings and drive improvements.

5. Ask the ‘dumb’ questions 

Many of us have experienced reticence about asking a question in a group for fear of appearing foolish. If public contributors do not fully understand the research context, they are less likely to be able to contribute meaningfully to a meeting. The PPI lead may then be the person to ask questions if they suspect or are concerned that some people may not fully understand. This will help give others the confidence to ask questions when they are uncertain.

6. Don’t overpack the meeting agenda 

The temptation, in research, is always to overload meeting agendas in order to get as much done and to make as many decisions as possible. However, fewer items will allow more time for discussion and debate. Often people struggle to express a view on the spot. They are less likely to have been engaged daily in the research in the same way as the researchers. Rather, they may need time to digest the information and percolate ideas. People need time to think about, debate and collectively generate knowledge before finding a more definite viewpoint.

7. Allow for flexibility in the agenda 

In everyday life, conversations rarely follow a strict agenda. Rather, they meander, go back and forth between topics and arrive circuitously at a view. Allow for this flexibility and fluidity in the agenda.

Creating a safe space for public contributors is vital in ensuring that their involvement in research is meaningful. Using these tips, the PPI lead can play a key role in creating this environment and ensuring that the involvement of public contributors is meaningful rather than tokenistic.

Gary Hickey is senior research inclusion manager in the National Institute for Health and Care Research at the University of Southampton.

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