Trusts have obligations – legal duties – both to reduce health inequalities and to involve patients in their services. Both tasks can feel complex, due to the scale of the challenge within a demanding operational environment. However, trusts can combine efforts on both fronts, by seeing co-production as a potential solution for tackling health inequalities.
NHSE have identified a specific role for senior leaders to understand their communities, to ensure that there are resources to deliver this work, and to demonstrate how their organisations meet the legal duties to involve people and communities (NHS England, 2022). They have outlined 10 principles for working with people and communities:
- Centre decision-making and governance around the voices of people and communities.
- Involve people and communities at every stage and feed back to them about how it has influenced activities and decisions.
- Understand your community's needs, experiences, ideas and aspirations for health and care, using engagement to find out if change is working.
- Build relationships based on trust, especially with marginalised groups and those affected by health inequalities.
- Work with Healthwatch and the VCSE sector.
- Provide clear and accessible public information.
- Use community-centred approaches that empower people and communities, making connections to what works already.
- Have a range of ways for people and communities to take part in health and care services.
- Tackle system priorities and service reconfiguration in partnership with people and communities.
- Learn from what works and build on the assets of all health and care partners – networks, relationships and activity in local places.
Taking an equity lens to engagement and co-production requires deliberative recruitment of specific groups and/or communities in engagement activities, ensuring that a diverse range of views are represented. Trusts should actively consider whether the views they are hearing from represent individuals from a range of protected characteristics or inclusion health groups (NHS Providers, 2023b). This could involve asking the question 'who is missing from this conversation?'. When considering health inequalities, trusts should avoid reliance on current patients and expand their co-production and engagement activities to broader communities who can provide a wider view of why they are not engaged with healthcare services. Trusts might also consider how often they hear from certain groups or individuals and look to refresh the range of people involved at different time points.
Trusts might also consider the format in which they conduct engagement, such as whether the spaces are accessible (physically and cost-related, due to transportation) or whether participants have digital access for online engagement. Timings for engagement activities can also be exclusionary for specific groups, such as for children and young people or those with caring responsibilities, which may require hosting engagement sessions outside of traditional working hours.
In 2023, NHSE launched the Patient and carer race equality framework (PCREF), which applies to all mental health trusts (NHSE, 2023). The framework provides a mechanism to support trusts to become actively anti-racist organisations and to reduce racial health inequalities. Co-production is at the centre of the framework to provide visible and effective ways for patients and carers to feedback on services, which is then acted and reported on.
Potential engagement activities
Practically, there are a range of potential engagement activities that trusts could implement. This list is not exhaustive or prescriptive, but provides a starting point for boards to consider when seeking to involve individuals and communities:
- Seeking feedback from patients about their experiences of care to improve decisions about their care (such as 'You said, we did' or 'We said, we did' mechanisms).
- Involving patients and the wider community in strategic decision making (such as contributing to the creation of policy and/or strategy documents, by setting actions for the trust).
- Involving patients in the design and delivery of service improvements (such as clinical practice).
- Employing lived experience experts within roles in the trust, to facilitate peer-to-peer feedback mechanisms (such as in research and/or quality improvement (QI) projects)
- Inviting individuals to join or engage with committees, working groups or board meetings.
- Establishing patient panels, forums or shadow boards within the trust (including dedicated youth forums), which provide a regular opportunity for sharing experiences which are embedded within the trust's governance structure.
- Involving lived experience experts within trust recruitment processes (such as sitting on interview panels or setting recruitment activities).
- Creating volunteering opportunities, or community ambassador/connectors networks, for individuals to reach into wider communities.
- Providing training opportunities for individuals that may need support to enable them to engage and share their views (including providing the skills to constructively contribute and outlining the scope of engagement exercises, what can and what cannot be influenced).
- Involving lived experience experts in the delivery of staff training, where appropriate.
- Facilitating peer-to-peer support networks for patients to meet others and share their experiences.
- Hosting celebration events to share and reflect on the impact that engagement activities have had on healthcare services.
Typically, engagement starts with speaking to individuals or groups to understand their experiences. This could involve interviews, focus groups, questionnaires or surveys to capture views. When taking an equity lens, it is important that trusts consider the inclusivity of their engagement methods, recognising that not all individuals will be able to engage in traditional formats, and may require appropriate support. Trusts could consider creative engagement activities such as drawing, crafting, poetry, videos, theatre productions or other means. Offering a range of potential ways for individuals to engage will enable trusts to reach a larger group of people. Also, all information provided should be available in clear and accessible formats to ensure inclusivity (for example no jargon or acronyms).
Given the range of potential options for involving patients and communities, it may appear daunting for trusts to decide on the most appropriate action. Trusts are advised to start small in their activities, to explore the benefits of different approaches and expand their engagement offer over time. Trusts are expected to learn from communities about how best to embed engagement activities in their local contexts.
Considerations for trusts
Identify the motivation
Utilising engagement or co-production activities should not be tokenistic. There needs to be a genuine reason for why trusts want to seek the views and experiences of patients, which would add value to the overall aims of the specific project or programme of work. Identifying a specific motivation behind the engagement and co-production will enable trusts to identify the most appropriate method for engagement, recognising that not all approaches are relevant all of the time, and different approaches will be relevant for different individuals.
Trusts are often grappling with similar questions and concerns when it comes to healthcare design and delivery. It is likely that others may have already carried out engagement or co-production with communities to help answer some of these questions. Trusts may want to avoid asking the same questions repeatedly, instead taking learning from what patients and communities have already said on specific topics and sense-checking these findings with their own local communities. Often findings from community engagement are published and shared online, we would recommend exploring the Healthwatch report library as a starting point. This may also involve learning from others trusts about their experiences from approaching community engagement.
Work in partnership on delivery
VCSE organisations provide a key role in connecting the NHS to people and communities. They are rooted in local communities and provide a bridge between health services and community feedback; they play a key role in enabling individuals to share their voices, which contributes to the delivery of inclusive services (Locality, 2024).
Trusts could work in partnership with VCSE organisations to draw on their expertise and reach to deliver their engagement and co-production activities. Often, especially when considering groups more likely to experience inequalities, statutory services (such as healthcare services) may not be trusted by individuals or communities. It is important to acknowledge that there is a historic power imbalance between health systems as the 'experts' and patients as 'service users'. Delivering co-production requires an acknowledgement and redressing of power differentials (People Hub, 2021). In comparison, VCSE organisations have trusted ties and relationships with different community groups. Working in partnership with these organisations can provide a means for trusts to work to establish trust, empowering individuals and communities to share their experiences within engagement activities. This is particularly important when staff within the trust are not representative of the community they are engaging with.
VCSE organisations are also likely to have the skills and expertise to carry out co-production and engagement methods with groups. Trusts will require funding for VCSE organisations where they work in partnership on engagement initiatives.
Organisations – such as Healthwatch and National Voices – are available to support healthcare organisations to utilise and embed patient voice and engagement approaches within their work. They provide tools, training, advice and guidance on how to carry out engagement in healthcare settings. As organisations that seek to raise the voices and experiences of individuals, they have individually conducted numerous engagement research projects with communities, both nationally and locally, from which lessons and insights can be drawn. Trusts are encouraged to connect to their local Healthwatch organisations (there are 150 across England) who can facilitate engagement with local communities. Local VCSE organisations are similarly well-placed to assist with engagement within healthcare settings.
Trusts could also seek to regularly hear and reflect on the views of their workforce as part of their co-production and engagement work, as equal partners with people and communities. Staff are representative of both their local communities and the organisation they work for, and so will offer valuable insights on service delivery and improvements. It is important to hear from a diverse range of voices within the staff workforce too.
Embed a culture of co-production and engagement
It is important that a culture of co-production and engagement is embedded across the work of the trust. The New Local identify culture as a key enabler for strategically collaborating with communities (Lent et al, 2022).
Enabling co-production and engagement activities requires time, investment and resource. The board plays a crucial role in supporting a culture of co-production and engagement within the organisation, by setting precedence from the top, in outlining a set of principles in which co-production and engagement activities take place in the organisation, by enquiring about how the views of communities have been involved, and enabling initiatives that utilise co-production and engagement to be delivered through resourcing. When embedded within the organisation, board members may view the capture of qualitative feedback and experiences of patients as equally important to quantitative data capture and reporting. NHSE have recommended that senior leaders should act as "champions" for co-production, building co-production into work programmes across the organisation, and utilising training opportunities to ensure that all staff are skilled in delivering co-production methodologies (NHS England and Coalition for Personalised Care, 2020).
Some trusts have appointed a director of community engagement and experience, or other similar job title, to champion and operationalise the delivery of engagement work within their trust. Other trusts have employed dedicated engagement staff and/or teams to deliver this work, ensuring it is embedded across multiple services and aspects of the organisation. Teams within the organisation could also be trained or coached on the topic of co-production and engagement, to enhance their knowledge and skills on engagement methodologies. Co-production and engagement represent a long-term endeavour for trusts, that requires sustained support and investment over time.
Trusts could also consider evaluating their engagement activities, to measure the impact of the initiatives. However, it can be difficult to ascertain evidence on the impact of co-production initiatives (Perry, 2022), particularly in relation to economic benefits (SCIE, 2022). Where co-production and engagement are well embedded, trusts may look to co-create evaluation and success measures with individuals and communities. Those carrying out engagement should always close the loop and provide feedback to patients and communities about the relevant changes their involvement has contributed to. Feedback and evaluation could inform future iterations of co-production or engagement within the trust to ensure continuous improvement (SCIE, 2022).