Integrating lived experience

This report uses the term ‘lived experience’ to describe the range of approaches that can be used by healthcare systems involve, listen to and work with the people and communities they serve. These include patient engagement, feedback and co-production (Wellings & Thorstensen-Woll, 2022). Integrating the voices of local people and communities is a central feature of integrated care systems (ICSs) and is crucial to building a learning health system. However, a 2023 report from the King’s Fund highlights that across England (Wellings & Tiratelli, 2023):

• Patient experience is not always prioritised within ICSs, including a lack of consideration of insights provided from patient experience compared to other types of data.
• There is not always enough capacity to ensure that patient experience ‘everyone’s business’.
• There is a need for clarity within ICSs for who has responsibility for different aspects of lived experience.

Where possible, data about the experiences and outcomes of people who have used the services of local mental health services has been included in this needs assessment. However, it is nationally recognised that there is a gap in the collection of outcome data from mental health services (Department of Health & Social Care, 2023)

Experiences of the mental health system

 

Where is lived experience collected?

• There are many ways to record and collect lived experience insights, including focus groups, surveys and personal blogs. The table below lists some of the key sources of lived experience insights that are collected.
• It is important to consider how well these approaches capture everyone’s voices: for example, national surveys may not be accessible or engaging to all groups.
• Integrated care systems need to understand the experience of individuals (who may have multiple needs and complicated routes to accessing care), rather than just experiences of people within individual services (Wellings & Thorstensen-Woll, 2022).

 

 

What does ‘good’ look like? 

Each integrated care board (ICB) is expected to have a system-wide strategy for engaging with people and communities. NHS England has defined 10 principles for how ICSs should work with people and communities:

1. ‘Put the voices of people and communities at the centre of decision-making and governance, at every level of the ICS.
2. Start engagement early when developing plans and feed back to people and communities how their engagement has influenced activities and decisions.
3. Understand your community’s needs, experience and aspirations for health and care, using engagement to find out if change is having the desired effect.
4. Build relationships with excluded groups, especially those affected by inequalities.
5. Work with Healthwatch and the voluntary, community and social enterprise (VCSE) sector as key partners.
6. Provide clear and accessible public information about vision, plans and progress, to build understanding and trust.
7. Use community development approaches that empower people and communities, making connections to social action.
8. Use co-production, insight and engagement to achieve accountable health and care services.
9. Co-produce and redesign services and tackle system priorities in partnership with people and communities.
10. Learn from what works and build on the assets of all ICS partners – networks, relationships, activity in local places.’

Ensuring people and communities are central to decision-making

There are many different frameworks for integrating lived experience, which may be useful for different projects (such as setting priorities or writing reports) (Greenhalgh et al., 2019). There are also multiple reports setting out best practice:

• The involvement of people with lived experience can be evaluated using the four patient involvement (4Pi) standards, which were developed by people with lived experience
• Co-production:
  • The SUN (Service User Network) report on Co-Production and Involvement Best Practice Guidance
  • Social Care Institute for Excellence’s report Co-production: what it is and how to do it
  • Nesta’s report Co-production: Right here, Right now
  • Rethink Mental Illness’s Model for Coproduction: a guide for Integrated Care Systems
• Building meaningful partnerships:
  • National Voices has set out 6 key features which ‘support meaningful partnership between lived and learned experience’.
  • The King’s Fund report on how to listen to and learn from people and communities
  • What Works Centre for Wellbeing has reviewed the evidence around community power and the impact on community wellbeing, including the enablers and barriers which can impact community agency
• NHS England has set out frameworks for the patient and public participation in commissioning:
  • Framework for patient and public participation in public health commissioning
  • Framework for patient and public participation in primary care commissioning

Integrating patient feedback

Patient feedback, including positive and negative feedback and informal comments, should be collected, analysed and interpreted. These findings should be accessible for staff, so they can utilise this feedback as a key ‘driver of quality improvement’ alongside other types of data to help understand what is happening within services (Kumah et al., 2017; Weich et al., 2020). However, too often:

• Patient feedback is not used to drive quality improvement (NHS Confederation, 2023).
• The data collected focuses on a single service or aspect of care, rather than looking at the experiences of individuals as a whole (NHS Confederation, 2023).
• The processes for embedding patient feedback vary both between and within NHS trusts, with national research highlighting that there is often insufficient use of patient experience data in inpatient mental health services (Weich et al., 2020).

Additional resources

• Health Innovation East Midlands have collated a range of Patient and Public Involvement Resources

References

Full list of references is included at the end of this chapter.

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