In January 2022, public and community members joined the ARC’s Executive and Board, sharing with others responsibility for leadership, including in involving people. And learning opportunities in 2022 for research leadership include strengthening involvement-related skills and knowledge, for instance hearing how diverse patients, service users, carers and members of the public can lead in this area.
So it might be a good time to think about leadership for involvement – but what this means in practice is not straightforward. The term “leader” is used in various ways in our society, not all of which tie in well with genuine partnership.
Section 5 of the ARC’s Involvement Strategy sets out who is responsible for what. Theme leads and other key figures have a critical part to play in making sure that enough time, money and other resources are set aside for involvement and that this is encouraged, supported and publicised. Also, there are certain people in the ARC (including service user researchers) whose specialist knowledge on involvement means that others sometimes seek their advice. And structures are in place to make sure that the ideals in the strategy, and activities to put these into practice, remain a high priority despite all the pressures and demands faced by ARC members and partners, with any necessary coordination.
This does not mean that taking a lead on diverse involvement can be left to a handful of people. In the media and beyond, leadership in research is sometimes portrayed as the realm of top academics or managers with a clear vision of what they want to achieve and how, who then harness others’ time and energy to pursue their vision. The world of research has many aspects and there is a place for single-minded dedication as someone spends years delving into a particular issue. However, involvement is about enabling people to share with, and listen attentively to one another, so as to shape research together. Bringing together different perspectives, and knowledge from lived experience as well as other sources, can open the door to fresh insights and discoveries and make it easier to put these into practice to improve services.
Indeed, there is increasing emphasis on co-production, in which power is shared, varied perspectives and skills are included and the knowledge of all working on the research is respected and valued. This means making sure that service users and carers from often-marginalised sections of the population, and ‘early career researchers’ (who may know a lot from other aspects of their lives), can contribute to their full capacity, alongside often-published scholars. Leading in involvement includes modelling good practice, for instance, active listening, and identifying questions which researchers and public contributors can think about together or creating space for them to do so, rather than trying to provide all the answers.
When I reflect on some of the people who have made a major difference in helping others across the ARC (and previous research collaborations) to value involvement, they are extremely varied. Some are known as leaders, in the ARC itself, voluntary sector, research, health, social care or other settings, while others have a lower profile. They include patient, service user, carer and public contributors, community partners, researchers and professional service staff who have, through their example or support, helped to break down the barriers which mean that, too often, having a say in research is regarded as not for “people like us” or too challenging to attempt. A number have been doing this for years, while others are new to it, perhaps just now discovering that others are being inspired or encouraged by them to put involvement principles into practice.
Thankfully, in my opinion, this means that taking a lead on involvement does not mean that someone has to have a long list of (sometimes contradictory) roles or qualities, of the type that can often be found in articles on leadership! Having said that, it may be possible to become better at it, partly by being aware of oneself and others and playing to the strengths of both.
At present this may include being sensitive to the toll the pandemic has taken on staff, public contributors and community partners and recognising the institutional barriers, as well as inequalities in society, which can get in the way of research which is truly responsive to local needs. At the same time, many people are keen to involve more deeply and broadly or to get involved, having realised how important research can be. Willingness to learn from failures – as well as celebrating what has been achieved together – can be helpful, at a time when emphasis on “success” can distort research and service improvement efforts. Compassion is, I think, crucial.
In the science fiction films of my youth, with clunky special effects, aliens arriving on earth or space-travelling humans would sometimes declare, “Take me to your leader.” If, in the distant future, a researcher (human or otherwise) were to look back at involvement in ARC South London and ask who led this, I hope there would be a very long list of names!
If you would like to discuss any of the issues in this article, please contact Savitri Hensman, the ARC's patient and public involvement coordinator at: