New strategy involving the public launched
More than 100 people including patients, service users, carers, research staff, members of the public and workers and volunteers from partner organisations took part in co-designing a new Involvement Strategy for National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) South London.
The Involvement Strategy sets out how the NIHR ARC South London will involve the public in its work. The development of the strategy was led by the ARC’s implementation and involvement team, working closely with a wide range of people in south London from diverse backgrounds. Together, they developed the strategy, using questionnaires, a series of workshops, and reviewing how we involved patients in the work of the previous organisation, the Collaboration for Leadership in Applied Health and Care (CLAHRC) South London.
Lana Samuels, public member, ARC South London, said:
The strategy is an excellent piece of work and an accurate reflection of all the discussions we have had. The content covers areas many of us have voiced, which are now highlighted so that they can be addressed, including oversight for assurance, improvement and or amendment. The impact will be evidenced when it is achieved and it will most definitely be beneficial going forward.
Zoe Lelliott, implementation and involvement team co-lead, ARC South London and deputy chief executive, Health Innovation Network, said:
Many thanks to all those who contributed to the co-production of this strategy, especially in the midst of the pandemic and all its extra emotional and practical demands. The strategy builds on the foundations laid by current patient, service user, carer and public contributors and research staff committed to involvement, but seeks to make this broader and more consistent and allow us to get better at learning from what has worked well and where there is room for improvement.
Equality, diversity and inclusion (EDI) is a central theme in the strategy. The aim is to work with groups across the nine protected characteristics covered by the Equality Act 2010. However, in relation to core research, they recognise that health outcomes are much worse for people who are from different ethnic backgrounds and people with disabilities in particular, and they have been worse affected by COVID-19. By having EDI at the core of our involvement strategy, the aim is to build broad community involvement with diverse communities in south London.
The strategy sets out responsibilities for public involvement at ARC South London and proposes four new groups to help ensure effective involvement: the Involvement Advisory Group; ARC South London Public Research Panel; Involvement Learning Network and the Equality Diversity and Inclusion Working Group. These structures, including the implementation and involvement team, the involvement coordinator and patient, service user and carer champions within each research theme, will help make sure there is effective co-production, involvement and evaluation across all research activities.
Support will be provided to researchers through guidance on best practice and how to communicate without clinical or research jargon, and the use of clear language. They will support patients, service users, carers and local people who contribute to our research with training and guidance, enabling them to gain more knowledge to support research applications. They will also find out the best ways of supporting and working with diverse communities who are not usually involved in research, so they can help shape our work.
Savi Hensman, involvement coordinator, ARC South London, said:
Despite much goodwill and commitment, involving diverse people in order to make a real difference in what is researched and how is not always easy. How the research world works can get in the way of listening to one another, reflecting together and drawing on lived experience to help shape research at all stages.
Yet this is vital if we are to get better at understanding and tackling the health and care inequalities which are so entwined with wider injustices and improving the wellbeing of south Londoners, at a time when there is a risk that divisions will deepen further.
To find out whether our work is making a difference, we will monitor and regularly evaluate our work and develop case studies of good practice. We will also seek the views of patient, service user, carer, and public contributors, our community partners and research staff in a range of projects, to identify what has worked well, or not so well from their perspective with regard to involvement. The aim is to learn continuously and strengthen good practice.