Applied Research Collaboration (ARC) South London ends on 31 March 2026, including involvement within it. Sadly this is the final issue of Together in Research. But the learning and development which this patient, service user, carer and public involvement has been part of, and contributed to, will continue far beyond this date.
Some of those who have worked for, or been involved in or alongside, the ARC may have enough to do in other projects to keep them busy or want a break from research. For others, this is a time of uncertainty. The National Institute for Health and Care Research (NIHR) is considering an application to fund a pan-London ARC. But even if successful, this may not be announced until June, with funding from July.
If you would like to be updated about this and other NIHR involvement opportunities in London from April onwards, the NIHR South London Regional Research Delivery Network (RRDN) has kindly offered to keep people informed. The ARC cannot hand over personal data but you can sign up here to be on this mailing list.
Even if a London-wide ARC gets off the ground in 2026, resources will be tight and inevitably it will be unable to do all that had been previously planned, especially since it will have to take account of government priorities. Nevertheless. it will provide an important opportunity to build on some of what was achieved in the ARC, including in involving patients, service users, carers and communities.
In a feature looking back at six years of ARC South London, involvement is strongly emphasised, and rightly so. While I recognise that this aspect of its work was imperfect, as is the case with research culture and systems overall, it has indeed been important; and has grown broader and deeper. This has been reflected in – and, I believe, encouraged by – our quarterly involvement newsletter Together in Research.
The current issue gives a flavour of the variety of items this has included, in addition to information about health and care research involvement opportunities which might interest south Londoners. Blogs, interviews, news items on projects or events with pithy quotes from those involved or enabling involvement, accounts from studies in which the views and insights of people with lived experience were central – all of these have appeared.
Over the years, various bodies have published involvement-related guidance (of an official and unofficial nature), much of it helpful. But this does not always get across what it is like to do research together or make this possible, the triumphs and tricky parts, learning points and questions which remain. And meaningful involvement, and those who help to make it happen (including examining what gets in the way), deserve to be celebrated!
(Caption: A woman asking questions at Active Involvement in Research in 2024)
Glancing through recent and earlier issues of the newsletter is a reminder of involvement-related activities, challenges, ideas and achievements over the years, across themes, in the ARC centrally and beyond.
Together in Research originally got off the ground in 2017, under the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London, which was succeeded by the ARC. From the outset, the aim included building relationships and enabling dialogue, rather than just sharing information about ARC involvement opportunities and activities.
And as the ARC started in autumn 2019, it was clear that the quarterly newsletter had a wider focus on health and care research involvement by and for South Londoners, with opportunities for shared learning. Over time, the items included reflected some of the developments at national as well as local level, while grounded in the realities of an area with much diversity and stark inequalities.
That disadvantage and discrimination often make people unwell, in addition to getting in the way of accessing appropriate, high-quality health and social care, has long been known. But this was increasingly emphasised in the ARC, along with the potential value of strong and diverse research involvement in addressing this, especially after the Covid-19 pandemic made the impact of multiple types of inequity grimly evident.
The spring and summer 2020 issues carried not only information on involving people online (at that point uncommon) but also reflections on the unequal impact and how research might respond. Increasing equity in and through research continued to be explored over the years, against a backdrop of sometimes stark injustice and violence as well as community action for health, for instance in autumn 2024
Another shift was that involvement became more systematic, nationally and locally, as recognition grew that it was ordinarily the right and just thing to do and could also benefit research. Together in Research was used to invite a wider range of people and groups to be part of co-designing the Involvement Strategy which would otherwise have been possible, while in 2021-22 some themes also worked collaboratively preparing their own, more specific strategies.
Lived experience in doing, in addition to advising on, research had a key role in shaping involvement in the CLAHRC and, from the beginning, the ARC. Some staff with involvement roles were part of the Service User Research Enterprise (SURE) at King’s College London, made up mostly of researchers with personal experience of mental health service use as well as academic knowledge, and informed by a wider service user/survivor movement. Yet during the life of the ARC, the value of expanding opportunities, including for peer researchers whose route into health and care research started by getting involved, became more widely established across the ARC.
There was greater shared learning too across the ARC, other university-based research teams and community organisations carrying out research and adding to knowledge in other ways (while also recognising differences in power, status and resources). It was not just a matter of disseminating findings to local people and groups, important as this was, instead talking with, and sometimes working alongside, others exploring and acting on related issues. Research on, as well as in, involvement has sometimes featured too.
Especially from 2023 onwards, there were more articles by and about service user and community-led research; and speakers from diverse community organisations at events organised by capacity building and involvement teams, with support from communications and other professional services staff. The informative and thought-provoking talks and discussions were reported on, and sometimes blogged about, afterwards, as reflected in this issue.
Together in Research helped to publicise, and share what came out of, Annual Active Involvement in Research events which brought together a wide range of researchers, ARC public contributors, local people and groups, health and care professionals and others. The news items, and reports from 2024 and 2025, highlight the value of thinking together about key health and care issues and sharing examples of good practice, particularly in involvement.
The sense of loss many feel as this ARC nears the end, and regret at being unable to take forward some of the involvement-related possibilities previously identified, should be recognised. But this does not mean that the changes made in and through involving people in the ARC over the years, direct or indirect (such as promoting or assisting involvement in non-ARC research) will end.
The skills, knowledge and confidence people have gained will carry on making a difference in future, as we each take these into other settings. And the stories told or touched on in Together in Research over the years will continue to resonate. It is good in many ways that more attention is now paid to the difference made by involving people, aspects of which may be immediately obvious. But the “impact” may be more long-term and subtle and it cannot be evaluated in the same way as, say, finding out if a new type of equipment for people who have just had heart attacks saves lives!
Part of the value of involvement in the ARC may be in equipping people to persist in pushing for high quality, inclusive research. despite major advances in this. Amidst resource pressures and a top-down/tick-box culture still common in health and care, there are moves towards “mainstreaming” which downplay the value of specialist input. Involvement may be everybody’s business but learning, sharing and updating good practice will not happen on their own, especially since people involved or involving others tend to be so busy. And research increasingly driven by centralised expectations of what ought to work, rather than the insights of people with lived experiences, underserved communities, frontline staff and researchers attentive to realities on the ground, risks missing the mark.
In addition, in the UK and beyond, the flames of anti-minority hostility are being fanned in ways which endanger health and care, as marginalised people are encouraged to turn their frustration on others also harmed by inequity rather than challenging this together. And research-based knowledge drawing also on patient and community experience, for instance on the hazards of infectious diseases, is sometimes going unheard amidst inaccurate claims promoted by sections of the social and mainstream media.
The value of participatory approaches based on dialogue in which those most affected by decisions are properly heard, and human rights for all, are under attack in some quarters. These may favour greater control by a handful of people who are already politically or economically powerful, who supposedly speak for “the people” (rather than letting people with diverse backgrounds and views speak for themselves). Research with meaningful involvement by service users, carers and communities, addressing key issues affecting them, can be messy and require more effort than “solutions” handed down from on high – but also more exciting, rewarding and useful, especially if widely communicated in accessible ways.
In these uncertain times, when mutual care and wisdom deepened through partnership compete with worsening inequity and scapegoating, those of us who have been involved, helped to involve others or both in ARC South London have much to offer.