Alliance report explores the role of patient experience in improving NHS services

19/09/2024

A new report published by The Neurological Alliance today highlights the appetite amongst voluntary sector organisations, healthcare professionals, NHS commissioners and managers to ensure patient experience is considered a core measure of NHS performance.

The report, “Are we listening? The role of patient experience in supporting and informing service improvement in the NHS” is available to read here.

The report is being published following the Independent Review of the NHS by former Labour Health Minister and independent Peer Lord Darzi, which found that patient voice needs to be increased in the NHS.

What did we do?

Ahead of the 2024 national neurological patient experience survey, My Neuro Survey, The Neurological Alliance worked with different stakeholders to better understand the role of patient experience data and insights in NHS service improvement.

Views and insights were gathered through three roundtable discussions and four semi-structured interviews with voluntary community and social enterprise (VCSE) representatives NHS stakeholders (including commissioners, managers and system leaders) and healthcare professionals.  The Alliance also commissioned a rapid literature review on the same topic, which was carried out by the Patient Experience Library.

Key findings

“Are We Listening?” provides a summary of key themes from these activities and five recommendations to further embed patient experience in NHS service improvement.

Patient experience should drive change

The appetite for, and potential of, increased collaboration between people with lived experience of neurological conditions, VCSE organisations, and NHS commissioners, managers and system leaders is clear.

Stakeholders made calls to embed patient experience alongside other key metrics, including staff experience, in assessing and improving services. Patient experience data is also key to better understanding areas of convergence and variation in service provision.

Patient experience data “drives change as any other data source would drive change”

NHS stakeholder

Perception of patient experience data and insights

The report highlights differing perspectives around the extent to which patient experience data and insights have previously been used to inform service improvement in the NHS. NHS stakeholders perceived patient experience as equal to other key metrics, such as activity data.  Voluntary, community and social enterprise (VCSE) organisations and healthcare professionals were more sceptical of how these insights were perceived and used in service improvement.

NHS pressures put the use of patient experience at risk

Pressures on the NHS such as lengthy elective care waiting lists, financial constraints and workforce shortages were felt to limit the scope for collecting and using patient experience data to inform service improvement.

“The two big limitations are finance and workforce”

Healthcare professional

Quality of patient experience insights

There were differences in the perceived quality of patient experience data and insights. For example, VSCE organisations highlighted examples of limitations to patient experience data being used to inform service improvement due to questions at a system level around how representative the sample of patients sharing their experience is of the relevant wider population, and externally collected patient experience insights being viewed as anecdotal.  There was also clear recognition by VCSE respondents of the need to challenge these assertions where relevant.

“We need to be more assertive and challenge more regularly,” VCSE representative.

Right data, right people, right time

The report highlights the need for different kinds of patient experience data and varying levels of detail to deliver change at different levels of the health system (local, regional, Integrated Care Board, Integrated Care System and national levels). There is also an acknowledgement of the high volume of patient experience and insights available and the challenges this can present to analysing and using this data to improve services.

Involving and supporting people who use services

The importance of meaningfully and equitably involving people who use services in the development of patient experience surveys and other methods for collecting data and insights is vital to ensuring they are capturing what matters most. This includes making sure data collection methods are accessible to survey users and designed with and by them.

What next?

The report presents five recommendations to improve and embed patient experience as a driver for NHS service improvement.

The NHS should:

  1. Develop a Patient Experience Dashboard

Healthcare providers should:

  • Routinely collect and analyse patient experience data about their services
  • Coproduce actionable insights

Everyone involved in gathering patient experience should:

  • Build in feedback loops
  • Ensure support and information is available to those who share their experiences

Putting recommendations into practice

The Neurological Alliance is already putting these recommendations into practice in this year’s national neurological patient experience survey, My Neuro Survey 2024, which is now open. My Neuro Survey is the largest survey of people affected by neurological conditions in the UK and the Republic of Ireland. The survey was developed with people affected by neurological conditions, including adults, children and young people, family members and informal carers, and healthcare professionals.

Find out more and complete the survey here.