A four year journey – Dr McCulloch reflects on the patient experience movement
As I step down as CEO of the Picker Group of charities (Picker Institute Europe and Picker Institut Deutschland), I am also retiring from full time senior management in health care and policy. After 35 years working for the Department of Health and health care charities, I reflect on my experience of working to improve patient centred care.
There has long been rhetoric from UK health departments about care becoming more ‘patient centred’. This is undoubtedly driven by sincere conviction that such care is both appropriate for citizens today and likely to be more effective and acceptable. However, the rhetoric is often confused, involving differing concepts including patient satisfaction, patient experience, patient centred care, informed consent, shared decision making, patient empowerment, direct payments and so on. Some values underpinning these concepts are no doubt shared and others may not be.
The last four years at Picker have given me a unique opportunity to understand the science behind patient experience and to consider the realities. This has been challenging intellectually and has also involved me reflecting in a different way on my own health care and care received by my family.
It has been salutary for me to consider how few of these episodes of care have involved the offer of evidence based, joined up, patient centred care, despite the best efforts of staff who are often pleasant, dedicated and sometimes exceptional.
One problem is the system does not track care experiences and outcomes against care journeys. This does not allow for the systematic assessment, in vivo, of whether care actually works. But we will get there. Big data is likely to revolutionize our understanding of what happens in vivo, as opposed to our reliance on in vitro (or at least artificial) research environments for evidence.
This experiential aspect for me has been linked to the privilege of seeing all Picker’s data and research and talking to our expert staff. I have learned many key lessons. Most notably, I have learned two things I might not have fully predicted:
- Patient experience has not improved much in key aspects of care such as clinician-patient communication. It has improved much more in measurable and more easily altered aspects such as waiting times, hygiene, and removal of mixed sex accommodation from hospitals.
- Staff experience has not deteriorated much yet as a result of NHS pressures. As measured by the NHS staff surveys, the NHS still enjoys high levels of staff engagement and commitment – but declines in these levels could have deep consequences.
These two facts, coupled with much other evidence, lead to the belief that patient and staff experience are complex factors; generated by mixtures of attributions, beliefs, history, relationships, respect and so on. This is why patient experience – important to engagement, concordance, outcomes and human dignity – is hard to alter in an upward direction. But change is what we are all seeking – not just measurement, however important accurate measurement is.
It has also taught me survey data does reflect reality. I have been able to reflect on people’s actual experiences of care and compare them to Picker results – there is a striking correlation to my eye at least. Staff recommendation is the single most useful marker about whether the culture of a health care institution is strong or weak. These results show enormous variation from less than 50% of staff recommending a hospital’s services in some cases with over 90% in others (often specialist hospitals offering world class care). Needless to say I have become personally wary of the former group of institutions but here too I have been inspired by some of the passion and hunger for change shown by staff.
What then of policy? It is likely to have a limited impact on the complexities of patient and staff experience because policy is best at:
- following rather than leading professional or public opinion or the evidence; and
- impacting discrete issues that are amenable to top down solutions.
We also have a major problem at present that over-arching policy for the NHS is aspirational rather than grounded in the realities of tight budgets, increasing demand and shrinking social care services, amongst other pressures. There is still a grand plan relying on heroic efficiency improvements rather than a pragmatic set of priorities.
What is needed is practical and evidence based interventions that improve both patient and staff experience, such as better communications skills training (and selection) and better emotional support for both patients and staff.
I would caution against too much reliance on technology to drive patient centredness. Patient centred care comes from the hearts and minds of staff and cannot be gamed in response to a web rating.
None of this means colleagues at the centre have not helped move forward these agendas. I would especially highlight the work of the Care Quality Commission and NHS England to collect good quality data on both patient and staff experience, expanding the extent to which data is collected across settings and specialties. The latter has been a very important part of Picker’s own work in recent years. Data from white middle aged males with heart disease are important but do not build the holistic picture of quality we require to ensure services are meeting all citizen’s needs. Secondly, I would like to highlight valuable initiatives either driven by or effectively supported by the centre, such as Always EventsTM, which has real potential to engage patients and staff.
What of the future? There is cause for both pessimism and optimism. The forces that could blow us backwards are all too obvious in terms of finance, workforce and tick box solutions. But the forces that can move us forwards are very powerful – including empowerment of patients and staff, big data, changing professional attitudes and the need for us all to take greater responsibility for our health.
Whatever the future, we will continue to need a strong focus on collecting hard evidence that shows – both quantitatively and qualitatively – the nature of patient and staff experience.