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UK Standards for Public Involvement – One 'very different' year on

Communications:Working together: Inclusiveopportunites: Impact: Governance: Support and learning

Public contributors Bob McAlister and Una Rennard look back at how far the UK Standards for Public Involvement have come in their first year, and the impact the COVID-19 pandemic has had on the research landscape. 

It was with justifiable fanfare that the UK Standards for Public Involvement (UKSPI) were launched in November 2019. Three years of work by a group drawn from across UK nations had resulted in a product that, by common consensus, had real potential to help researchers, involvement leads, funders and public members move public involvement in research to another level. Beyond that central team had been all those that had responded with vigour to extensive consultation and then trialled the standards in their own contexts for a fully monitored year. A great collective effort led to a well-designed and tested set of standards.

Creation and COVID

We were the two public members on the Development Group working with representatives from Health and Care Research Wales (HCRW), NIHR, the Chief Scientist Office Scotland and the Northern Ireland's Department of Health and Social Care.

Our task was to fulfil an undertaking from the NIHR’s 'Going the Extra Mile' strategy, building upon INVOLVE Values and Principles Framework – to produce standards to frame what good public involvement looked like. After a great effort, the task was done – if not dusted.

Then, just after we all had the product ‘out there’, a great big elephant called COVID walked into the room and has had a huge impact on the research landscape - including PPI.

To say that health and care research priorities have changed would be an understatement. Lots of research activity had to move to a new crisis mode. Resources in terms of people, time and money were shifted to work on the pandemic response. We saw that public involvement initially suffered in the haste to get COVID research up and running, but there was a swift response from leading bodies such as the Health Research Authority (HRA) and NIHR to address that, and some new and inspiring practice sprung from many quarters, such as public involvement in the REACT study from Imperial College London or a new advisory group created by Health Data Research UK.

But what happened to the UKSPI in this period of unexpected turmoil?

A happy accident

Whether by accident or design, it seems approaches to involvement emerging from a COVID world have broadly aligned to the standards on ‘working together’ and ‘inclusive opportunities’. We’ve experienced this personally ourselves:

Bob says: “I would have thought that Zoom was the name of a comic, rather than the medium by which involvement now takes place."

And Una adds: “The projects I have been involved in during COVID-19 have, in the main, risen to the challenge to continue to involve patients and the public in ways that support the standards. It is much easier to sign up and attend a conference when it is online and there are less expenses. Meetings have become less time consuming, a two hour meeting now takes two hours rather than all day with travel – a real bonus for a carer like myself!”

Forging the way

Despite the many pressures the involved public and the research system have been operating under, it appears the UKPSI have continued to gain traction and are being used in a range of interesting ways to drive continuous improvement. So, who is blazing a trail that others may want to follow?

To give a few examples; in Wales an online training package is about to be launched by the HCRW Support Centre, which fully introduces ways of working with the six standards. A Welsh Government Public Involvement Award based on the standards has also been introduced. NIHR has used the standards to establish priority areas for a new cross-NIHR Improvement Plan.

The General Medical Council are drawing upon the standards to shape their approach to patient and public involvement (PPI), and Health Data Research UK plan to align their strategy to the standards. In the Midlands, a new initiative called Insight|Public Involvement is using the standards to co-produce a new quality awards programme for organisations involved in health and care research.

Are you using the standards?

The UK Five Nations group (the leads for PPI in each of the UK administrations) continues to provide oversight of how the standards are being used, and their development over time. The NIHR Centre for Engagement and Dissemination (CED) chairs this group, and is keen to hear about how you are bringing the standards to life in your work, and what difference it's making; whether you’re building on previous work with the standards or newly grappling with them! CED hopes to use this insight to share learning and good practice across involvement communities and help us all to maximise the positive impact we can have over the coming months and years.

Una Rennard and Bob McAlister are Public Contributors to Health Research and are UKSPI Development Group founder Members.

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.