Relationships and people are the most important things in experience of care, whether that is the experience of patients and carers who receive the care or staff who deliver the care.

My role as experience of care lead for national clinical programmes was to build strong relationships with the clinical programmes leads within NHS England. I supported them to deliver improvements to experience of care thinking about the three components staff, patient and carer experience.

The work was based on the principle of person and family-centred care and the key to that co-production was supporting people with lived experience to work in equal partnership to develop services and improve care. 

Co-production

Part of the process of co-production is to understand what is already known, and we look at experience of care data through the viewpoints of the patient, carer and staff.

I know from the evidence that staff members who are supported, confident and feel comfortable in their work deliver improved experience of care. To explore the link between staff and patient/carer experience I started to look at the three experiences using three different data sources. Quantitative, qualitative and narrative data. 

• Quantitative data are information that is measurable and in numerical form.
• Qualitative data are information that capture people's views, emotions, thoughts, and attitudes.
• Narrative data are information created and constructed from the stories of lived experience and what those experience mean to the people who lived them.

Using these three sources of data gives much more insight than any one form of data and gives us a 3 x 3 view - staff, patient and carer experience - through quantitative, qualitative, and narrative data. We have started to view individual stories as data with heart.

Digital stories

My passion for the last four years has been the work I did in healthcare settings, where we were able to develop our understanding and skills in storytelling. 

Using digital stories we were able to train more than 150 people across the provider network to work in partnership with patients, carers and staff. A digital story is a first person narrative in audio form, which is overlaid with art or photographs. The principles of recording digital stories are: 

• Person who tells the story tells it in their own way.
• The story belongs to the person who tells it and they give their consent to share the story. 
• The person who tells the story has their own copy, which they can use as they want to.
• The editing of the person’s recording and the use of photos to create the digital story is done in partnership with the person telling the story.

Impact

Through the storytelling work we have also co-designed an impact and outcomes framework that tracks where the story has been shared, when, with how many people, any feedback, actions logged and any improvement work by the organisation is tracked, so that we can build an evidence base about the impact of storytelling. 

By sharing digital stories at the NHS England National Quality Board, we have initiated four national programmes of policy work to develop a national care partnership policy, a policy to feed parents when their children are in hospital, improve food for children, and to introduce play specialists seven days a week.

The digital stories work has helped us develop how we use the following data sources 

• Survey – quantitative
• Free text – qualitative
• Stories – narrative data

to improve experience of care.

I have recently left NHS England to take up a position as Head of Public Involvement and Engagement at National Institute for Health and Care Excellence. In this role I will use the focus on people, relationships, co-production and stories to influence NICE guidance, working with experience of care and quantitative, qualitative and narrative data approaches to help close the health inequality gaps.

I am looking forward to building on the work I have done at NHS England and transferring the skills, knowledge and experience to deliver the challenges of health inequalities across health and social care.

Lesley Goodburn is Head of Public Involvement and Engagement at NICE and has worked in patient experience and public and patient involvement for the last 15 years. She previously worked as Experience of Care Lead for National Clinical Programmes and Provider Improvement at NHS England. 

Listen to Sophie’s Legacy a digital story told by Charlotte Fairall, Sophie’s mum. Sophie died in 2021 from a rare form of cancer. Since her death, Charlotte has campaigned for play specialists in hospital, improvements to hospital food for children, for food to be available for parents of hospitalised children, improved healthcare professional training in childhood cancer, and an increase in funding for research into childhood cancer.
Sophie's Legacy and NHS England launch initiative to feed parents in hospital