Published: 18 February 2020
The UK Standards for Public Involvement aim to help researchers and organisations climb to lofty heights in patient and public involvement and engagement in research. Bella Starling outlines her experience in testing the draft standards - how the standards informed practice in Manchester, and how practice in Manchester informed the standards.
I’m not a big fan of cable cars – which is strange for someone who loves to be in the mountains – so it’s always good to glimpse the heart-shaped kitemark symbol of the cable car glass, as I peer down the ravine. I am instantly reassured that I am in a good quality, reliable and safe environment.
What would a kitemark look like for public involvement in research? This is what the UK Standards for Public Involvement set out to find out.
The UK Standards for Public Involvement are a framework for what good public involvement in health and care research looks like. The standards, which cover six areas, include questions to help people and organisations identify what they are doing well, and what needs improving.
Testing the standards in practice
Here, in the Public Programmes Team at Manchester University NHS Foundation Trust, we were privileged to be chosen as a testbed for the standards, helping the UK partnership to test, challenge and refine the standards for public involvement in research.
As a team, we lead patient and public involvement and engagement (PPIE) with research across a large patch of clinical research, experimental and translational medicine in Greater Manchester including as part of the NIHR Manchester Biomedical Research Centre (BRC) and the NIHR Manchester Clinical Research Facility (CRF).
As such, we support a wide variety of researchers and public contributors, with different backgrounds, skills, experience and expertise in PPIE (as elaborated in our strategy). This presented us with a unique and diverse setting within which to test the standards. We reflected on how the standards helped appraise our work; and how our work could inform the standards.
We applied the standards across three different PPIE contexts:
- First Steps: contexts in which researchers and public contributors are perhaps more inexperienced, or first-timers. Like those starting on the nursery ski-slopes of the mountain.
- Everyday Practice: those undertaking PPIE ‘business as usual’ with good groundings and levels of competency. Those navigating the blue and red runs of the mountain, not without the occasional bump and tumble.
- Aiming High: the well-versed PPIE partners (researchers and public contributors alike). The black run enthusiasts, with perhaps an appetite for some off-piste.
We’re really glad to see that these contexts are reflected in the final standards. Public involvement does not come in ‘one size fits all’, so appreciating context and difference, we feel, is really important.
Considering inclusivity
When the cable car tips me out at the top of the mountain, the peaks are snowy and white, as they have been described in the context of diversity and inclusion in the NHS. Inclusive opportunities is one of the six standards, and a major focus of the work and strategic priorities of our team.
Offer public involvement opportunities that are accessible and that reach people and groups according to research needs
Reflecting on this standard enabled us to appraise our inclusive practice. We strive to push the boundaries when it comes to inclusion in public involvement, including through:
- A portfolio of community-led PPIE practice, including establishing a Black Asian Minority Ethnic and Refugee Research User Group.
- Standardising how and what we capture in terms of demographic data, across participation, engagement and involvement within Manchester BRC and CRF research.
- Training to support #InclusiveResearch.
- Identifying barriers to inclusive involvement, and how to potentially overcome them.
- Establishing a Health Inequalities Steering Group across the Manchester BRC and CRF.
Testing the standard enabled us to:
- Identify some barriers to inclusive research that we hadn’t previously considered (such as childcare costs, and how to process these, because some systems require registered childminders to allow expenses to be paid).
- Consider how we should change some of our involvement formats to become more inclusive.
- Further identify our internal team training needs, resulting in a whole team training day focused on building our capabilities for inclusion.
We challenged the standard to:
- Go beyond the consideration of physical and logistical inclusion. Inclusive opportunities take account of attitudes, behaviours and privilege – which are less visible.
- Encourage awareness of barriers that exist beyond our own immediate knowledge and experience. We need to challenge our biases and perceptions from whatever constituency we’re from – whether researchers, practitioners or public contributors.
- Consider how power dynamics can be changed through flexibility of involvement formats. Changes to formats are sometimes resisted, and an over-reliance on academic structures can prevail. Creating an open environment, balancing formal and informal, is key.
- Acknowledge the usefulness of establishing and maintaining trusted partnerships with organisations and people who have more experience in certain areas, such as specialist organisations focused on protected characteristics.
- Recognise that ‘making information available’ is not always enough; creative, proactive and accessible engagement work is an important precursor to involvement.
What next?
In Manchester we tested all the six standards, and overall we found the standards most useful in providing an informal framework for evaluating and planning PPIE activities and processes. A framework that gives guidance on areas we should be assessing our performance in, allowing us to reflect on how we are performing in these areas and prioritising where we most want to improve.
Although our testbed experience is over, the standards remain ‘live’ in our consciousness and our day-to-day activity. We regularly revisit them, as part of our learning by doing approach, questioning our activities against the principles elaborated by the standards.
The standards are a positive step towards ensuring trust in public involvement. Questions remain as to how the standards will be applied, reported against, monitored – or even enforced. Until then, our cable car is on the right track.
- Bella Starling - Director of Public Programmes and Wellcome Trust Engagement Fellow, Manchester University NHS Foundation Trust
Lead for Patient and Public Involvement and Engagement, NIHR Manchester Biomedical Research Centre and NIHR Manchester Clinical Research Facility