It is the commitment of leaders, not the use of surveys, that will properly harness the power of patient experience, argue Seraphim J. Rose Patel and colleagues.

Patient experience is firmly on the agenda and a key priority for all of NHS organisations.  But how can an organisation measure effectively the patient’s experience and how do we utilise the feedback that comes from true engagement in the design of quality services?

Patient stories are full of rich qualitative information. By engaging with and listening to patients we can understand their experience of the frontline services they are in direct contact with. If we can understand what quality looks and feels like to the patient we can then design our services to deliver quality at every step of the patient journey from admission to follow up.

Many successful organisations take the view that delivering quality is key to success and efficiency, however there is a caveat, any activity or resource that does not add to quality must be removed where possible and there is a point of diminishing return that must be observed.

If one turn’s this into a very simple high level iterative process it would include five steps (see diagram 1). At the very top of the cycle when engaging with the patient it is necessary to listen and identify their wants, needs, issues. Frontline staff define what needs to be done to lead to service improvement.

Success would be recognisable when the culture or the very DNA of the organisation is fully committed to and engaged in this process to the degree it becomes a virtuous circle. A key metric would score the efficiency and effectiveness of this improvement and innovation process.

There are many NHS organisations, directorates, departments that engage, solicit or receive  feedback. We are becoming sophisticated at collecting feedback through the various internet technologies, social media, blogs and feedback forms.

The challenge is how do we analyse the rich qualitative information? How do we gain an insight into what the collective patient experience is? When the NHS in England deal with 1 million patients, every 36 hours, how can we identify then define what the problems are?

There have been a number of tried and tested methods for measuring the patient experience, the most common methods for example have been patient surveys and questionnaires. Another method used to measure patient experience is to reduce the scale to make it more manageable and increase the richness of the data – and to ask open ended type qualitative questions in which user data can be recorded and content analysed. There are also a number of techniques being developed for text data capture, analysis/content analysis, including semantic search.

The questionnaire dates back to the early 1870s and it allows us to analyse feedback by converting qualitative information into quantitative information.

How many times has the patient been given a questionnaire, asking questions that does not address their experience and perceptions? Ticking the box to a question that one knows forms a statistic that doesn’t represent the patient story.  For example, How satisfied are you with your experience of x: (a) Not satisfied (b) Satisfied (c) neither satisfied nor dissatisfied.  When what the patient really wants to do is tell their personal story and perceptions, based on real experience.

Even more concerning is that to design a questionnaire one is already making a fault the assumption to have identified the area or context of the patient’s experience, predetermining the information, even though that’s clearly not the intention.  Or put another way the closed questions are probably generic in nature and based on cross cutting themes rather than pathway specific, the patient journey is pathway specific, not theme specific. So using questionnaires and surveys to measure and monitor patient experience and redesign services is at best limited, at worst fundamentally flawed.

Taiichi Ohno founder of Toyota Production System was renowned for chalking a circle on the shop floor and new managers were initiated by being told to stand in the circle until they can see something they can improve.

Of course the frontline of the NHS is vast so if management can’t experience the frontline then we must take real experiences from the frontline to management in a collective way that gives them insight and a definition of the problems and constraints that are faced.

Measuring and analysing patient experience

To effectively manage and analyse a significant volume of experiences and give the user strategic insight as well as the ability to drill down to the detail, four things must happen:

  • Segment the volume of information into manageable amounts.
  • Structure the information; either it is flat and wide, it has multiple hierarchical layers, or it is three dimensional.
  • Placed into context, there needs to be a universal set of rules that can be applied to any situation that reliably and consistently places the information directly into context.
  • Prioritisation, so the user can identify what needs to be looked at and in what order. Pareto Analysis uses the Pareto Principle – also known as the “80/20 Rule”.

Once we have this qualitative information distilled to knowledge and prioritised, we can start thinking about where to use it in redesign services, to do this it would help to understand what the concept of a system looks like. If we view the human body as a system it is made up of many parts each with its own purpose, parts that are interdependent and need to work in harmony with each other.

Using the concept of purpose the system of an organisation can be broken down into its interdependent parts. Purpose is a natural law which can be seen everywhere in nature, everything nature designs has its purpose, as nature responds to change new design features appear, if there is no need or purpose any more the features over time disappear.

By identifying clusters of collective experiences and perceptions that accumulate in context on the parts of the system or on  pathways or the subsections of pathways  the 80:20 Pareto principle can be brought into play and we can benefit from the 20 per cent of work that will generate 80 per cent of the results

If you were charged with redesigning a specific part of the stroke  patient pathway, for example early supported discharge, the ideal situation would be that at the click of the mouse  you would have the collective experiences, perceptions thoughts and ideas  from any stakeholder not just patients  on a  list  in front of you. Even better if they were further structured, sub divided and categorised in a way that aided the redesign that would be a significant advance on the current analysis of qualitative information, experiences and perceptions. 

To have a complete view of the pathway and  its subsections from all stakeholder perspectives to then be able to slice and dice this information by stakeholder group, provider, theme and subtheme, within a date range separating issues from ideas wants and needs, that would be a true innovation of the engagement to improvement process.

The Institute of Health Improvement identify the key role of leadership and management in ensuring that patient experience is central to the service and to improving quality. “Leadership behaviour at the executive, middle and front line levels is essential to achieving exceptional results.

“Leadership commitment to creating an environment that nurtures and continuously improves the patient and family experience and results in positive outcomes is essential. When executives delegate improving the patient experience to caregiving teams, results are isolated and limited. Effective leaders demonstrate the components of IHI’s Framework for Leadership for Improvement: they have the will, ideas, and commitment to executionto achieve results.

The path to achieving excellence in the patient and family experience includes a group of dynamic, positively reinforcing actions rather than a linear set of activities.

For instance, effective leadership engages the hearts and minds of staff and providers, which in turn provides a foundation for respectful team communication and partnerships with patients and families, which in turn reinforces staff and provider engagement.”

Published by the NHS Institute for Innovation and Improvement Transforming the patient experience: the essential guide notes that:

“Critical to the entire hospital’s success is senior leaders’ ability to continually clarify, articulate and model the organisation’s goals for patient and family experience and why they matter… Often missing are leaders skilled in making sense of patient experience for others in the organisation. These leaders commit to creating a positive patient experience and are able to tap into the collective energy of staff members, encouraging staff to test new ideas for change and generating action from everyone in the organisation rather than relying on direction from leaders or the next new initiative.”

They also note that:

“In order for the patient experience to improve across the organisation, the person with primary responsibility for managing patient experience will need to engage colleagues and the senior team to ensure that they understand what patient experience is, what it means for the organisation. In addition plans need to demonstrate how feedback can be gathered; the process of identifying and implementing improvements with patients and staff; and what the benefits will be for patients, staff and the organisation.

For patient experience information to be used effectively within an organisation, the organisation needs to be prepared to change. This is not a ‘tick box’ exercise and if the organisation is going to embrace the idea of working with patients as partners in the re-design of services to improve patient experience it will require fully engaged leaders to support the required culture change.”

It is essential for leaders, managers and staff at all levels to take on and own the crucial importance of patient and carer views in order to drive the improvement of and maintain the quality of services.

Learning from patient experience is critical to improving care quality, safety and efficiency because patients can tell you what is working and what isn’t. Effective leadership needs to take this on board.