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People power: how to make better use of patient experience

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.

Readers' comments (15)

  • Well-intentioned (if poorly authored) article, but it is naive to think that the approach of discourse analysis (which is the academic name for the technique that this article describes) would or could ever be used effectively in the NHS. It requires highly skilled people to do it properly ... this costs £££ ... trusts do not have the funding to implement the recommendations that would pour out of it (if it was done properly!) ... Lovely thought, but that's where it will stay I'm afraid.

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  • We already spend £££ and huge man hours collecting this qualitative information, failing to use it in volume is a waste of this rich information source. If this methodology works it’s simply a matter of, do the benefits outweigh the costs. All improvement costs time money this should not mean we don’t do it!

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  • SERAPHIM J. ROSE PATEL

    I think one of the major challenges in healthcare is the fact that there is such a diverse group of clients and their needs are multi-faceted. Listening to them, their views and not having a pre-defined solution and clients being engaged in the whole systems approach with good leadership should lead to positive outcomes.

    High contextual understanding of patients experience is the only thing coming over the horizon that can actually give us a better understanding and reshaping NHS for future."

    I am intrigued to know who the first anonymous writer is . My view is that if one is to make a critical judgement it would be fairer to be transparent who you are and what your expertise is, as then this allows me as well as other readers to understand and accept the validity of the comment made. The article does clearly state
    "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?" What I am offering is my expertise input having worked on many quality, service improvement projects.

    The second comment is quiet well put, we need to invest and make a judgement call, do we continue as we are OR we move ahead with changes that would lead to better outcomes, however, without investment this would be difficult hence why we need leaders to lead that equates to what the article is saying.

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  • One of (if not the) greatest challenges the NHS faces around patient experience is working out how to make sense of the mass of data the system collects and turn it in to useful information.

    However, perhaps more significantly, in order for Trusts to really start to leverage its power there needs to be a little more joined-up thinking about the costs and benefits of patient feedback. I am pretty certain that if Trusts gather and use feedback appropriately then there will be clear Return on Investment - both financial an in terms of patient experience/outcomes - but doing so requires Trust to think about patient experience as being integral to their organisation rather than being a "bolt on" to tick a box.

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  • "What I am offering is my expertise input having worked on many quality, service improvement projects."

    !! There are at least two grammatical errors in the brief snippet quoted above. Not wishing to nit pick - but it would support your cause immensely - given that the thrust of it is quality improvement - to address this sort of thing. Inadvertent as I am sure these mistakes are, they unfortunately detract from what is otherwise a very credible and sensible message.

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  • Seraphim J. Rose Patel, you have the most beautiful name.

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  • Some of these comments seem a bit troll-y! The issue is how do we take qualitative analysis seriously - it is a discipline that has been much maligned in academic circles as not being "scientific" enough - as if quantitative measurements are absolutely the only reliable form of knowledge. The truth is, there is much written about methodology, and sociologists and consultation and participation workers have been doing this stuff for years. LINks and Healthwatch have an absolute mandate to ensure people can comment, so why not commit to supporting the professional teams behind every LINk, and commissioning them to do some work for you?

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  • The author seems to lack knowledge of what the system is already doing with regard to patient feedback.

    NHS services of all types are already rated and commented on by thousands of patients via NHS Choices website, the single portal for the NHS.

    Recently published academic research shows this data - collected for over 5 years now - correlates positively to actual hospital performance.

    The data is visible to all and is fed on an XML feed to the CQC each month. It in turn uses it in its risk profiling of hospitals.

    Good hospital chief execs get their managers to produce a summary dashboard of the NHS Choices patient feedback results for them each quarter so they know what is going on.

    The bad ones don't do anything and only find that things have gone tits up when the CQC comes knocking. Midstaffs was a prime example of this.

    There are only two issues that need sorting going forward:

    - can every patient who uses the NHS be encouraged to add their views to the existing database in order to give it greater force?

    - can those responsible for NHS services be made to read and act on the data collected?

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  • 1:19

    NHS Choices doesn't collect meaningful data. It collects patient stories given by a very small number of patients (my local Trust has less than 60 ratings, and a total of <200 comments in 5 years, from several hundred thousand appointments per year!)

    When it comes to using that (limited) feedback, part of the problem is that it is incredibly difficult to use free text feedback from such small numbers of patients to see what is REALLY going on. That isn't to say that you can't highlight a few areas for improvement, but it's more luck than science.

    As for increasing use: were Trusts to do so they'd probably increase not only the number of "nuggets" of insight but also the amount of noise around them (making them harder to spot).

    Lansley was right when he identified in his first speech as SoS for Health that people need to be asked much more specific and relevant questions. Precious few Trusts are doing this. Hopefully the Friends and Family Test will encourage them to do more.

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  • 2.06

    You are wrong. Choices collects user ratings on a bunch of highly specific questions for each hospital and freeform comments.

    See the Imperial research published earlier this year for hard evidence that the ratings correlate with hospital performance.

    If you need help interpriting the data (ratings or comments), ask the CQC or Imperial to share their methods with you.

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  • 7:28 - there are 5 very generic questions (about cleanliness etc) asked on the NHS Choices site.

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  • The NHS does need to make better use of qualitative data, although progress is being made already - PatientOpinion's online feedback service has gathered 40,490 patient stories which have led to 299 documented service changes.

    Technology is improving, which should make the process cheaper, quicker and more powerful. Look at what Fizzback are doing with Natural Language Processing to extract sentiment from customer feedback: http://www.fizzback.com/?page_id=28

    The interesting thing about Fizzback is how they (and their private-sector customers) prioritise swift action to retain customers based on individual feedback. If true patient choice takes off, NHS services won't be able to afford not to take 'customer' retention seriously.

    Ultimately, the technology can allow pro-active feedback gathering: rather than direct people to NHS Choices or its replacement, a hospital could actively monitor Twitter, Facebook etc for people discussing their services.

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  • 40 000 stories isn't really a great deal when you consider that Patient Opinion gathers feedback from all Trusts and has been running for more than 5 years.

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  • It’s simple if you want to see with your own eyes how large volumes of stakeholder feedback can be structured analysed and distilled into insight that informs improvement, innovation, resolves issues and simplifies complexity, please email me paul@akumen.co.uk

    I don’t mind what you call it, all I know is it works in any business or organisation with any problem, is proven, what is more in 5 years you will all be using it just like you use excel for Quantitative analysis.
    Discourse, sentiment or semantic, analysis can do none of the above.

    Hard to believe, please read the quote below...

    “To date no organisation has the ability to extract genuine ‘wisdom’ from unstructured qualitative data. In my opinion, Akumen is the first organisation on the planet that has created a solution to the problem”.

    Darrell Mann 10-06-2012
    Author of the world’s leading IT innovation book, ‘Systematic Software Innovation’

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  • Quality is a subjective assessment, not an objective one.

    I've been doing change management for decades and have successfully got people to love and respect incredibly bad system that make life harder and deliver less service, while I've seen colleagues make advantageous easy to use systems hated and resented.

    It's not asking the questions afterwards, it is managing people's expectations during. Not to get people to expect the poor, but that their needs were "well" met at the time and made them happy/content/satisfied.

    We seem locked into ensuring arguments between academics rather than facing up to the issues.

    Mike.

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