Involving service users in co-designing healthcare services can pinpoint problem areas and help to improve staff wellbeing and user experience.

Policy recommendations

  • Experience-based co-design (EBCD) of healthcare involving service users as partners with staff should be actively promoted nationally and locally, as an effective way to achieve person-centred improvement and cultural change in healthcare.
  • 'Trigger films' of people talking about their experiences of services are a key part of the initiative. Existing, nationally produced trigger films have been shown to be a low-cost high-impact resource. Policymakers should consider funding and support for further trigger films to expand this free-to-use national resource.
  • National and local health organisations should raise awareness among NHS staff about the Healthtalk online resource on health experiences, and support development of new interview collections to cover areas not yet included in the Healthtalk archive.
  • Maintenance of The King's Fund EBCD toolkit should be supported, alongside continued investment in The Point of Care Foundation co-design training programme for NHS staff and patient leaders.

About the research

Several reports have highlighted the importance of service users' experience in shaping and providing effective healthcare. NHS England has been a world leader in developing a comprehensive national survey of in-patient experiences.

Improving people's experience of healthcare has previously been highlighted as a priority area in the Coalition Government’s White Paper Equity and excellence: liberating the NHS. However, evidence suggests that further work is needed to use experience data, not just for measurement but to stimulate local service improvement.

Experience-based co-design uses video interviews with service users to engage staff in just such a change process. Analysis of stories of personal experiences is used to create a 'trigger film' which staff and users watch together to start a discussion about improving care locally, before setting up co-design working groups to plan and implement changes.

Researchers at the University of Oxford and King's College London have previously demonstrated that using an archive of existing nationally collected interviews can work as well as locally filmed interviews in stimulating the co-design activities. In a new study the team conducted secondary analysis of data from the same archive of 3,000 video and audio interviews with people about their health and illness experiences, to identify what matters to people with a range of conditions, and to produce new trigger films for NHS staff.

Key findings

  • Consistent with other findings, what matters most to people experiencing healthcare is often less about major organisational issues or service delivery models, and more about relationships, staff attitudes and acts of kindness. This holds true across a range of demographics and different conditions, including physical and mental health.
  • In addition, people from black and minority ethnic backgrounds experiencing mental health problems report that cultural awareness and language remain important issues.
  • Summarised research findings and video extracts from the Healthtalk website are sufficient to create new trigger films for local experience-based co-design projects, without the need for re-analysing full transcripts – minimising the cost of further trigger film production.
  • Users identified very similar themes to researchers, and recommended a model where they identified key themes to guide the researcher, and provided feedback at the trigger film's draft production stage.
  • The main challenges for improving user and staff experiences are to secure clinical and non-clinical leaders and frontline staff’s commitment to concrete action to improve care. Trigger films encourage them to work with service users to design and implement improvements to local services.

Brief description

The research project ‘Secondary analysis of qualitative video health experience interviews’, led by Professor Louise Locock with Ms Susan Kirkpatrick at Nuffield Department of Primary Health Care Sciences, University of Oxford, has analysed data from previous research to identify evidence of person-centred improvements in the quality of health and social care. The project is co-funded by the ESRC under the Secondary Data Analysis Initiative. Research collaborators include The Point of Care Foundation, the DIPEx Charity, King's College London and NHS England.