In March 2021, ARC South London adopted an Involvement Strategy. A year-and-a-half later, what difference has this made? Certainly there has been much work done on the activities in the strategy, which has been monitored by the ARC leadership and National Institute for Health and Care Research (NIHR) – but to what effect?
I could provide some facts and figures from the past 18 months, with maybe a table or two, though giving a truly ‘objective’ answer might be hard or even impossible. But instead, I will share my own impressions (though with thanks to others in the involvement team). I would say that the strategy has made quite a difference – though on its own it might have had a more modest influence – in unexpected as well as predictable ways.
The Involvement Strategy takes on board national guidance, for instance on the need to specify how, and by when, aims and objectives will be put into practice. But it very much reflects the views and commitment of ARC South London patient, service user, carer and public contributors and staff and the realities for local people.
When NIHR awarded funding to ARCs across England, to start in October 2019, they were expected to have a strategy for patient and public involvement in place within the first year. By the end of March 2020, a national workshop had been held, with some guidance such as the kinds of things each strategy should cover, though much was left to each area to decide – and the country was in the grip of a pandemic. Every ARC was given until March 2021 to develop its strategy.
A rapid review of involvement, engagement, diversity and inclusion in ARC South London had already been carried out, with some practical suggestions which could be a focus for discussion. Meanwhile many local residents, and a number of staff, were badly affected by the spread of Covid-19. The Equity, Diversity and Inclusion (EDI) lead Josephine Ocloo and I organised an event to gather views and experiences of South Londoners about the unequal impact of the pandemic which underlined the importance from local people’s perspective of listening to diverse voices and tackling inequality.
If the ARC was to make most difference, it would have to take on board the burning issues for those most likely to face preventable ill health and difficulty accessing appropriate care and learn from their insights. This awareness influenced the strategy.
Ordinarily there would have been face-to-face events to help develop the contents collaboratively: but these were not ordinary times. Across ARCs as well as within ours, information was being shared on remote working. The involvement team managed to come up with a process that was safe and included a wide range of people even if not perfect.
The strategy was co-designed, with input from a hundred or so patients, service users, carers, researchers and members of the wider public. The development process also helped to build relationships which would be fruitful later, as staff and contributors from different themes worked together. The Involvement Strategy was agreed by the Executive and Board and launched.
The Strategy set out the purpose, aims and three core principles which emerged from what people said:
The history of involvement in the ARC was outlined, with examples of how this made a difference, for instance in day care. The Strategy went on to outline structures for involvement in the ARC, including an Involvement Advisory Group, a Public Research Panel and wider Involvement Learning Network, plus public members on the Executive and Board and arrangements at theme level. There were brief details of who would be responsible for what, with objectives, activities and timelines. Sections on resources and monitoring and evaluation (‘How will we know we are making a difference?’) followed and the importance of communication was emphasised.
The Strategy then had to be put into practice, whilst providing ongoing support to those involving people at theme level in widely varying projects (and learning from them as well as from those involved).
The involvement team, working alongside others in the ARC and partners, collected information on what was already happening in themes, drafted terms of reference and role descriptions, identified people for these positions, briefed them and got the new structures off the ground. At times, I felt rather like a chef racing around a busy kitchen, helping to prepare meals for several diners at once while trying not to splash myself with hot soup!
But there was a sense of satisfaction as things took shape, including a more visible public and community presence, and greater diversity (due too to additional work by the EDI lead) at leadership level and in ARC-wide events. There was also work undertaken on learning and guidance for involvement, though with still more to do; and on evaluation.
The ‘Activities and timelines’ were very useful in setting out an agreed way forward on how to organise and support involvement in the ARC, and offered a sense of progress as we could cross actions off the ‘to do’ list. But it was vital that this be more than a tick-box exercise. This included acting on points which people involved flagged up, such as arranging some face-to-face outreach in summer 2022 as well as an online event. I recognise though that we are far from perfect.
I think making a difference has been largely reliant on ARC (and wider research) culture and systems. Examples include the Chair, at Executive meetings, creating a welcoming atmosphere and inviting public and community members to speak; and theme leads creating space for involvement. At the same time, the research world does not always make it easy to act on the priorities and insights of diverse people with lived experience; and shortage of resources, including staff time, for involvement, amidst competing priorities, is an ongoing issue.
I do not underestimate the power of words. But I reckon that strategies on their own – even with clear objectives and matching actions – are often of limited benefit. Where the Involvement Strategy has worked well, I believe this has been largely because of a wider culture and systems in the ARC, commitment on the part of staff and key contributors and a network of relationships which have made progress possible.