PROMs: counting what matters most to patients

The introduction of patient-reported outcome measures (PROMs) has the potential to transform health care, according to The King's Fund Chief Economist John Appleby. But NHS leaders must move quickly to engage staff and patients in understanding and acting on the findings.

This year the NHS in England plans to spend £103 billion. That's more than £280 million every day. And in the three minutes or so it takes to read this it will spend nearly £600,000. So what do we get for our money?

The core business of the NHS is to produce health. But the NHS – like all health systems around the world – has very little idea of whether it produces health, as it does not routinely measure patients' health-related quality of life.

This failure makes it difficult to establish where the real gains in health are to be made, which treatments and modes of delivery are most effective, and how hospitals and clinical teams (and indeed clinicians) are really performing. It has also prevented any systematic analysis of investment and, importantly, disinvestment decisions: where would each health pound do most good for patients?

The good news is that from 1 April 2009 the NHS will become the first health system in the world routinely to collect patient-reported outcome measures.Newly released guidance for PCTs and hospitals – including independent sector organisations supplying care to NHS patients – sets out what needs to be collected, when, and by whom and how the new data will be integrated with other routine patient statistics.

The original announcement about PROMs data was made in the 2008 operating framework. The NHS Standard Contract makes it a requirement that the monthly clinical quality performance report should include patient-reported outcome data for four areas – operations on hips, knees, hernias and varicose veins. Nationally, this should mean around 250,000 patients a year will be reporting on the state of their health.

It's hard to overstate how profound the impact of PROMs could be for the NHS, patients and the public. For the first time there will be a quantified measure of both the generic and disease-specific quality of care patients receive from the NHS. PROMs go way beyond simply asking 'are you satisfied?'. Using detailed questionnaires they will elicit patients' assessments of aspects of their health-related quality of life – how mobile they are, their mental state, their overall health etc. Similar questionnaires have been used for years in clinical trials and more recently by BUPA to evaluate their consultants' quality of care and to feed back to patients.

The possible uses for this information are extensive. For example, it can be used to adjust the NHS's frankly crude and probably misleading activity-based productivity measures for quality. Patients will at last have a real measure of quality to help them make properly informed decisions about which hospital/specialist to choose. And PCTs will finally have the sort of information they need to identify the best-performing providers, to place contracts accordingly or to exert evidence-based pressure on those who are under performing.

PROMs could also provide basic evidence to inform the revalidation of clinicians and the performance management of hospitals. Such data would have wider impact, helping in the re-evaluation of old and new treatments as they are delivered in the real world, providing a source of patients' own views about health and health care, and tracking changes in clinical opinion and action on when to admit and treat patients.

Linking information on PROMs to patients' medical records and other datasets would, for the first time, allow proper evaluation of broader government health policies as they affect equity: not just how much benefit, but who benefits and by how much. Do certain groups in society benefit less than others from NHS treatment?

There is still work to be done to, for example, construct a reliable and accurate way of adjusting the raw PROMs data to take account of variations in the characteristics of patients and other factors so that proper inter-hospital and other comparisons can be made. But the crucial first step is for trusts and PCTs to ensure they have plans in place for the collection of PROMs.

This won’t just be a technical exercise. Patients and – particularly – staff will need to be persuaded of the benefits of this information if they are to avoid seeing this as just another bit of bothersome, top-down, 'beast-feeding' nonsense irrelevant to their care or jobs. A key lesson for the NHS – which it has not always learned – is that those who provide data need to see the results – literally. So trusts should plan ways of feeding back PROMs results to individual patients. And clinicians need to be involved in deciding how they will use the data to improve the quality of care they provide.

Rolling out PROMs to other operations and services may prove challenging – how can changes in health-related quality of life be captured for long-term conditions or mental illness? There will be limits to the scope of PROMs but, given the starting point, it has huge potential.

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Comments

#49 Louis Coiffait

It's a policy with huge future potential and this is a great summary of what that potential might involve.

However I would add a couple of cautions: firstly survey fatigue among both staff and patients is now rising fast with patients often facing multiple research exercises in a single interaction with the NHS; secondly PROMS only represents the very start of good research into patient experiences of the NHS, our work in deliberative research, ethnography and other innovative techniques goes under the skin of the patient experience, uncovering the questions they don't know how to ask and the knowledge gaps they don't know they have.

#59 Gillian Parker

I would like to see more discussion on Mental Health issues, especially in the community, how the Mental Health Teams are structured and what sections of the trust does what to benefit patients and how it affects patients. I think mentally ill patients should be asked to comment more often.

#69 Howard Clark

Counting what matters to customers/service users/patients is something that Professor John Seddon derived as part of his systems thinking methodology.

It can be found in his books Freedom from Command and Control and Systems Thinking in the Public Sector.

Stories of systems thinking in action in the public sector can also be found on The Systems Thinking Review.

#90 Nick Wood

I have seen little discussion of PROMs in cancer services. Presentation of disease can be hugely varied in symptomatology depending upon screening and disease site. Disease treatment can also be highly morbid. I think that there needs to be discussion amongst oncologists to determine appropriate and consistent 'generic' tools and close scrutiny of whether availble specific quality of life tools are appropriate for measuring PROM in oncology.

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