Prioritizing patient experiences in health Prioritizing patient experiences in health

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By: Dr. Edward Fitzgerald

'Patient-centred care' is a phrase often used but less frequently delivered on. Often glossed-over amid the day-to-day challenges of operations, workforce, and finances, healthcare providers need to remember that these are not the ends in themselves for high-quality care. Understanding and delivering a good patient and carer experience should not only be a core objective for health organisations, but is increasingly a point of competitive advantage and source of disruption across healthcare. Dr Ed Fitzgerald looks at the evidence, shares his global learning from leading healthcare providers, and explains why healthcare providers need to start taking patient experience measures more seriously.

There is compelling evidence that taking a user-centred approach to designing, delivering and evaluating care services benefits patients and health systems. Yet few care providers harness users' experiences to guide what they do, focusing instead on measuring financial performance, demand, and adverse events such as readmissions and infections. But if we do not ask patients whether their needs are being met, how can they know if their care is good?

A systematic review by Doyle, Lennox and Bell (2013) (PDF 1.39 MB) of 55 studies in primary care and hospitals found consistent evidence of a connection between patient experience, safety and clinical effectiveness, and concluded that these three elements of care should be regarded as central pillars of quality. Yet too many healthcare organisations and providers are still side-lining patient experience as too subjective, disconnected from 'real' clinical outcomes.

A Health Foundation review (PDF 1.39 MB) of the evidence behind the measurement of patient experience highlights the extraordinary range of tools that are used, from in-depth interviews and detailed surveys to patient stories, online ratings and public meetings. Each approach has its advantages and limitations. For example, in-depth interviews may be useful in providing detailed information on patients' experiences, but they are time-consuming and less useful for gathering hard numbers or identifying safety concerns.

Surveys have a number of advantages. There are many existing validated tools, questions and analysis can be standardised easily, surveys are easy to anonymise, they are less intrusive than interviews and are relatively cheap. But they may lack depth, it can be difficult to explore the reasons for any differences between groups such as patients from different ethnic backgrounds, and there is a tendency to focus on satisfaction rather than dissatisfaction.

The Health Foundation highlights a number of basic questions that need to be asked when trying to assess patients' experiences. These include considering exactly how the patient experience is being defined and why it is being measured.

Teams need to think carefully about designing, testing and improving their approach, and consider how best to present the results to different audiences such as clinicians, patients and hospital boards.

One important tool is the use of patient-reported outcome measures (PROMS). These are questionnaires completed by patients which tend to reflect their broad experience - including how the care received affects quality of life - rather than just measure what is important to the healthcare system. These survey tools tend to fit into three groups:

• Generic measurement tools, e.g. quality of life
•  Condition specific measurement tools, e.g. respiratory disease
• Treatment specific measurement tools, e.g. hip replacement.

Developing and statistically validating these outcome measures can take several years, and involves clinicians, researchers and patients. Established examples include: EQ-5D, developed by the EuroQol Group to measure health-related quality of life, used for a wide range of health conditions and treatments; the Dermatology Life Quality Index (DLQI) (PDF 124 KB), the first dermatology-specific instrument, consisting of 10 simple questions now used for over 40 skin conditions and available in over 90 languages; and an assessment of eye health with 25 questions known as the National Eye Institute Visual Function questionnaire (VFQ-25) (PDF 39 KB).

The NHS was the first health system to collect PROMs routinely, starting in 2009. The ambitions for using the data show its potential for driving care quality improvements. The aims were to:

• Help patients make informed choices about their treatment
• Benchmark the performance of healthcare providers
• Incentivise better care by linking payments to providers with their performance in improving patient health
• Improve the understanding and management of referrals from primary to secondary care
• Facilitate cooperation between clinicians and managers in delivering care
• Enable clinicians to monitor and improve their practice
• Strengthen regulations around safety and quality.

PROMs tools will only be used widely if they are easy and convenient for patients to complete. Electronic capture such as via a smartphone app is obviously best because it is quick, minimises missing or incorrect data and enables rapid analysis.

As well as needing to be simple, PROMs depends on persuading enough staff and patients of the benefits to secure a viable sample size, so engagement is vital.

Patients need to be asked to make their assessment at the time that is most useful. Short-term data has the attraction of quick results, but on its own it risks missing out valuable information from weeks, months or even years after treatment.

PROMs are potentially powerful tools in giving voice to patients who are often marginalised in the care system, such as those with learning disabilities, or people with limited literacy. The NHS is among the health systems trying to address the problem of people with learning disabilities or autism receiving poor care, amid a growing awareness of the need to understand the whole experience of care from their perspective, not simply look at the clinical outcomes.

Making PROMs work for people with learning disabilities or autism is a powerful illustration of the importance of patient involvement in each stage of development, and ensuring the data collected is valid for different groups.

The data capture model needs to be trialled before complete rollout. This includes designing and preparing the tools, establishing the collation method for the data and ensuring the right information governance is in place. Transparency about the process and involving other stakeholders in evaluation are vital to success. Assume that mistakes will be made and improvements required.

When analysing the data, attributing the outcomes achieved to the quality of care can be difficult because of the myriad of factors which will affect the health and wellness reported by the patient. Adjustment for case mix is required if results are to be compared between providers, and decisions need to be taken about whether differences are attributable to the care systems themselves or the individuals providing the care.

But despite the challenges of designing an easy-to-use survey, achieving the right sample size, getting the timing right, reflecting the experiences of all patient groups, and connecting outcomes to the quality of care, implementing PROMs can deliver significant systemwide benefits.

Giving weight to patient reported measures can motivate clinicians and help ensure care is centred on the needs of the patient rather than the system. It keeps staff focused on outcomes rather than outputs and activity, and starts to redefine concepts such as productivity in ways which are more meaningful.

Patient measures can also help drive down costs by helping staff identify and eliminate parts of the process which patients do not value.

The renowned Cleveland Clinic in Ohio, USA, claims to be the first major academic medical centre to have made patient experience a strategic goal. It started focusing on monitoring and analysing patients' experiences more than a decade ago, and its research quickly revealed surprising results. Staff had assumed that waiting times would be the major issue, but patients told them their biggest concern was the way physicians communicated with them.

On my recent visit I met with Cleveland' Chief Experience Officer and learnt first-hand how the Office of Patient Experience provides resources and analytics across the organisation, collaborating with departments to improve care quality. It also identifies and disseminates good practice from other institutions.

Prioritising patient experience at the Cleveland Clinic has driven quality in several areas. Better communication with patients and families about medication, such as the benefits and side effects, have improved compliance with drug regimes. Night-time noise (a problem highlighted in many NHS hospital surveys) has been reduced, the quality of clinical rounds has been improved to strengthen relationship-building with patients, and “no pass zones” empower any member of staff to respond to a patient call light.

Most importantly, the Clinic invests in supporting clinicians and departments with targeted training to help those where improvement may be needed. Regularly monitored and considered as part of performance reviews, this helps to successfully close the loop between their strategic goal and behaviours at the front line.

Oxleas NHS Foundation Trust, which provides community health, mental health and learning disability services in south-east London, has been using “experience-based co-design” to involve service users in improving adult acute mental health wards.
Videos of structured discussions with service users helped staff understand what it felt like to be in their care, such as how they were admitted, how their basic needs were met on the ward and how staff interacted with them. This included gaining an understanding of how well staff handled sensitive safety issues such as removing shoelaces and lighters and providing plastic cutlery.

Staff have now implemented a series of changes which, although small in themselves, make a big difference to the people being admitted. Oxleas is now making a video of what service users and their carers can expect on admission, including information about the different professions on the ward, how the days are structured and when people will spend time with doctors and nurses.

But not all patient experience data is used so effectively. The King's Fund and Picker Institute Europe looked at the inpatient surveys for the acute trusts in England from 2005 to 2013 to see if all that data collection was making a difference. With 20 questions answered on nine occasions for 156 trusts that came to 28,000 data points.

They concluded that too little use was being made of this wealth of information, with only modest improvements being achieved, and too little value being attached to it by clinicians and trust leaders.

Further in-depth work was conducted at five trusts to understand why patient experience data was not getting more traction. Barriers included too little time and money to implement changes, blame cultures inhibiting staff from engaging with poor results and scepticism among clinicians about the validity and relevance of the data. Staff trying to champion patient experience work struggled to make it everyone's responsibility, with it typically being seen as a “nursey” thing.

Organisations which had more success had stronger support from the leadership, a champion with dedicated time and responsibility, and training and support for staff in using the data to drive improvement. Hospital-wide reporting of data was seen as vital in making it prominent.

The area where patient experience could have the biggest impact - but so far has been the subject of too little research - is in integrating services. Data tends to be collected for one part of the system, such as going to see the GP, rather than reflecting the experience of the whole system.

Healthwatch England - a statutory body championing people who use health and social care services - heard from more than 3200 people about their experiences of being discharged from hospital (PDF 4.2 MB). It highlighted how people suffered poor care because of the administrative boundaries between services.

Experiences included long delays in hospitals sharing critical information with GPs and care homes, prescribing problems, serious delays in providing equipment and follow-up support in the community and failures to provide important information on how to access services in a crisis. All this drove up the rates of readmission to hospital.

As the King's Fund has pointed out, growing levels of multi-morbidity mean that many people are now in contact with a wide range of health and care professionals, and poor coordination between them can undermine both mental and physical health. As many countries increase efforts to integrate health and care services, mapping and understanding the patient experience provides vital information on where and how services need to be connected.

In more competitive health systems, those who are able to offer patients and their families joined up services, responsive to their needs, with a smooth and timely provision are likely to see considerable demand from a patient group rapidly becoming accustomed to better levels of service in other areas of their lives.

Importantly, while clinicians and providers are familiar with the complexities of clinical treatments and outcomes, carefully monitoring their objective performance, patients are not, and their more subjective care experience may be their only measure of 'quality'.

Appreciating and acting on this is important, and in many countries we are already seeing examples of traditional incumbent healthcare organisations being challenged and disrupted by new market entrants offering improved levels of patient experience, be that through communication, ease of access, transparency, or responsiveness.

Despite being awash with data, healthcare organisations and systems alike still make too little use of information about how their work impacts patients' lives. It's time to give a greater priority to measuring and responding to the insights of service users, realising the potential opportunity to improve effectiveness and safety, reduce waste, and deliver a better quality of life. Isn't that why we're all working in healthcare?

Dr. Ed Fitzgerald is KPMG's Global Healthcare Executive, and brings 12 years' clinical experience of hospital-based work in the NHS and international health systems prior to KPMG. Ed leads global healthcare research and thought leadership, working internationally to support KPMG's health practice across more than 45 countries. His experience of the world's healthcare systems and services helps him share the latest best-practice insights with clients globally.

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