The Department of Health has published a new framework for patient experience referencing our work at The King's Fund with Glenn Robert and others at King's College London, commissioned by the NHS Institute for Innovation and Improvement. The framework is not entirely new – it draws on 20 years' of evidence about what matters to patients accumulated since the seminal publications by Gerteis and her colleagues. But why do we need a national framework for patient experience? And, why do we need one now?
Our research showed that many senior leaders and others charged with improving quality in the NHS either do not know, or do not believe, that there is an evidence base on patient experience. They are not confident about measuring patient experience themselves, and do not necessarily understand that there are real and important conceptual differences between different types of measure (measures of satisfaction, experience, patient reported outcomes (PROMS), and patient defined outcomes). Regrettably, it is questions such as these, that are essentially technical (What indicators should we use? How many data points is sufficient? Which method should we use to collect the data?), which tend to dominate the approach in NHS organisations towards improving patients’ experiences.
We have found that NHS organisations collect feedback from patients without first asking the fundamental question, 'What problem are we trying to solve?' and 'When we have the data, what will we do with it?' We found very few NHS organisations with an overall strategy for improving patient experience, a defined budget, personnel with relevant expertise to collect data, analyse and present it, and an education and training plan with a budget for improving patient experience.
In this respect, patient experience differs from other dimensions of quality (clinical quality and patient safety) where the debate is rightly less about measures and measurement, and more about what needs to be done to respond to the evidence and what works in terms of change management.
A national definition of patient experience is a welcome step in the right direction. Hopefully it will help stop people re-inventing the wheel, and provide a common base for the way government and national bodies (such as NICE and the Care Quality Commission) develop guidance and hold NHS bodies to account.
However, still more could be done at national level to direct local organisations to focus more effectively on what they can do to improve patients' experience of care. There are some resources available, including the NHS Institute's Transforming Patient Experience: essential guide, and we would like to see a national resource with a helpline, along the lines perhaps of the Health Quality Improvement Partnership for national clinical audit, dedicated to answering the technical questions that trusts need answering about indicators, measures and measurement.
Drawing on our recent research, on the evidence on what works in health care improvement, and on our own work with NHS trusts, we recommend that any set of national measures of patient experience should be designed to serve the three purposes of the Outcomes Framework: accountability (reporting upwards), transparency (reporting out to patients and the public, which means reporting measures people understand) and improvement. The key to making improvements in service quality though, is to win over clinical staff, especially doctors, and encourage clinical leadership on patient experience. We believe that measures of patient experience must be aligned with clinical level data on process and outcomes; must be rigorously based on evidence (a no brainer), must be simple and must be embedded in the new quality standards from NICE.
Comments
I totally agree with the need for a national patient expereince framework, but like any other community engagement activity, if the patient voice can not influence a change in quality, performance or direction, then it is not worth engaging. Additionally, over the years communities have experienced consutlation overkill, achieving very few results. Consultation and engagement in general is a two way process and feedback is crucial (You said, we did). In many cases as result of the public providing their experiences there is little chance of achieving lasting improvements, either due to the lack of resources or services not wanting to receive feedback that conflicts with their scheduled plan or direction.
Patient experience is becoming like governance - the more the NHS talks about it and generates frameworks, principles and guides, the less it seems to really understand it or be able to apply it. The latest NHS framework is no doubt very well intended, but reading through it I could not help but react (badly) to its rather twee and patronising tone. What do patients and carers want? It isn't rocket science. Just look at "The Patients' Dozen" list that David Gilbert of InHealth Associates has put together(December 2011) for a direct and simple framework about quality and the patient experience that is easy to remember and to apply. inhealthassociates.co.uk/index.php/articles The other key thing the NHS framework lacks, is the patient leadership dimension. Patients and carers can become resources, assets and advisors about care quality and not just passive recipients of well directed care from others. Once care providers are helped to see that, then patient leadership will be the X-factor which will change the way care is delivered and experienced. That's what "nothing about me without me" should really mean.
The NICE guidance identifies 14 separate quality statements, which are too many to remember or to use routinely. These are introduced as if they were separate dimensions of patient experience, but they are mostly concerned with the nature and quality of the relationship between patients and their clinicians. While this is of vital importance, it is not the sum of what most patients think of as their experience. There is little about the transactional aspects of the patients experience, such as temporal aspects, such as waiting, delays, punctuality and cancellations; nor is there much about aspects such as whether staff have all your notes, results and letters and other knowledge available when they see you. Statement (12) "Patients experience coordinated care with clear and accurate information exchange between relevant health and social care professionals" may cover this, but most readers would interpret it as relating more to cross-sector communication between health and social services.
I agree that this area requires a lot of work and understand from colleagues that most Patient Experience data is so biased as to make it of little worth. My professional background as a Manager in Social Survey in ONS gives me the knowledge to recognise the difficulties in collecting accurate data. I also believe that this can easily be rectified by recruiting and training hospital volunteers to collect data in a standardised and independent fashion. I agree that this should be resourced from a central body and HQIP is a good example of such.
Jocelyn
I agree with your analysis - specifically the issue that clinicians do not really value the use of measures of patient experience (e.g. from patient surveys) as a credible evidence on the quality of care they are providing. In our GP Inquiry work at the Fund it was clear that patient surveys were the least respected of all approaches that might be used to drive quality improvements, partly because of the flaws in the measures and methods for getting such feedback, but also because that the cultural value placed on the intrinsic value of user experiences is low. Developing useful and credible measures in this area is important since, as we found, 'what is measured gets done'.
Comments
I agree with your analysis - specifically the issue that clinicians do not really value the use of measures of patient experience (e.g. from patient surveys) as a credible evidence on the quality of care they are providing. In our GP Inquiry work at the Fund it was clear that patient surveys were the least respected of all approaches that might be used to drive quality improvements, partly because of the flaws in the measures and methods for getting such feedback, but also because that the cultural value placed on the intrinsic value of user experiences is low. Developing useful and credible measures in this area is important since, as we found, 'what is measured gets done'.
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