From collection to action: Making the most of experience data to embed person centred care in the NHS of the future

In a previous blog, Chris Graham discussed the purpose of patient experience measurement – and how measuring what matters can drive person centred care. But there is more to improvement than measurement alone, argues Olli Potter.   

Measurement of patient and staff experience is well established in today’s NHS. In England, we are fortunate to have large, high quality data collections that have been running since the early 2000s – when NHS trusts were first asked to collate this data systematically.  

Asking people for their feedback is crucial: their responses can lay the foundations for robust analysis and insight and, in turn, support positive change. But whilst feedback is necessary for improvement, it is not sufficient: it must be properly interrogated and understood to drive effective and lasting change. Without this, data collection risks becoming a tick box exercise.  

The current state of patient and staff experience

Recent surveys show that people’s experiences have been worsening. The most recent NHS inpatient survey data shows that patient experience has declined across communication, coordination and waiting, while two in five (43%) elective patients said their health deteriorated while waiting to be admitted to hospital1. Data from the community mental health survey shows that 44% of respondents overall said waiting times were too long, increasing to 61% among users of Child and Adolescent Mental Health Services (CAMHS) who are over 16 years old2.   

Additionally, 2023 NHS staff survey results show that measures relating to burnout have remained high, with 42% of respondents often or always feeling burnt out at the end of their shift. Staff who work in patient-facing roles, particularly registered midwives, ambulance technicians, paramedics and ambulance control staff, report higher levels of burnout compared to their peers, as do some minoritised groups, including staff who identify as LGBTQ+ or are members of the Gypsy or Irish Traveller community.  Additionally, the percentage of staff reporting they feel safe to report concerns at work is currently at a five-year low (62% in 2023, compared to 65% in 2020)3.

Providers are working under significant and converging pressures, particularly as a result of the Covid-19 pandemic, and progress on some metrics, for both staff and patients, has been slow. While change can take time and requires appropriate resources, we owe it to staff as well as patients, service users, their families and carers, to act – in partnership – on the wealth of data held and the experiences they have shared. As Coulter et al. note, “it is unethical to ask… [for] comment on their experiences if these comments are going to be ignored”4.  

Barriers to acting on experience data

Patient and staff experience data can, however, be overwhelming. Research shows ward staff can struggle with the complexity and volume of data received, often due to a lack of relevant training and time5. This is unsurprising when NHS staff survey data shows only 26% of staff report that they “never” or “rarely” experience unrealistic time pressures6.  

It is well established that the NHS is undermanaged and that there has been underinvestment in digital capability, affecting both patients and staff7. Healthcare managers have expressed concern that they do not have the staff or expertise within their teams to “produce meaningful conclusions from the data they received”8. Patient experience officers are “an emerging professional group” within the health service who, with appropriate training and development, could support the interpretation and use of data9.  There are parallels here to the implementation of NHS England’s equality, diversity and inclusion improvement plan10 – similarly underpinned by extensive data collection – where NHS trusts have reported that analytical expertise within teams is an enabler of progress on the plan’s high impact actions11.  

A vision for 2035

The NHS in England is fortunate to already have gold standard patient experience data through the national patient survey programme, for which collection should be maintained. How this data is utilised both locally and nationally, however, needs greater consideration as the new government develops its NHS plan for the next ten years. Lord Darzi’s recent review was clear that the patient and staff voice is not currently loud enough in the NHS12, and the upcoming ten-year plan represents a window of opportunity to actively centre patient and staff voices.  

To reach this goal, the next decade will need to see a more universal move beyond measurement and towards the informed, data-led improvement of patient and staff experiences. NHS organisations must be empowered to understand and act on feedback, which can be achieved through the establishment of a national centre of excellence that provides expertise and hands on support. Additionally, all NHS staff should be trained in person centred care, with a focus on shared decision making, personalised self management and clear patient communication. The NHS must also embrace new and emerging technologies to realise these aims. Taking these steps would empower organisations and professionals to realise the potential of feedback in improving person centred care.   

Picker recently published a series of blogs responding to Lord Darzi’s review of the NHS. These explore the importance of self management, peer support and personalised care planning as the NHS tackles waiting lists.  Our manifesto for the future of person centred healthcare contains more details on our vision for the future.   

References

• 1 Care Quality Commission (21 August 2024). Adult inpatient survey 2023.
• 2Care Quality Commission (18 April 2024). Community mental health survey 2023.
• 3 Survey Coordination Centre (May 2024). NHS Staff Survey 2023 – national results briefing.
• 4 Coulter, A., Locock, L., Ziebland, S., & Calabrese, J. (2014). Collecting data on patient experience is not enough: They must be used to improve care. BMJ, 348 (mar26 1), g2225–g2225.
• 5 Sheard, L., Peacock, R., Marsh, C., & Lawton, R. (2019). What’s the problem with patient experience feedback? A macro and micro understanding, based on findings from a three-site UK qualitative study. Health Expectations, 22 (1), 46–53.
• 6 Op cit.
• 7 Institute for Government (13 June 2023). The NHS productivity puzzle: Why has hospital activity not increased in line with funding and staffing? 
• 8 Sheard et al, op cit.
• 9 Locock et al (2020). Understanding how front-line staff use patient experience data for service improvement: an exploratory case study evaluation. Health services and delivery research 2020 (vol 8 no 13), 64.
• 10 NHS England (8 June 2023). NHS equality, diversity and inclusion (EDI) improvement plan.
• 11 NHS Providers (May 2024). Learnings from the equality, diversity and inclusion improvement plan system collaborative.
• 12 Department of Health and Social Care (12 September 2024). Independent investigation of the NHS in England.