Measuring what matters to patients

BMJ 2017; 356 doi: https://doi.org/10.1136/bmj.j816 (Published 20 February 2017) Cite this as: BMJ 2017;356:j816
  1. Angela Coulter, PhD
  1. Nuffield department of population health, University of Oxford, Oxford OX3 7LF
  1. angela.coulter{at}dph.ox.ac.uk

OECD Health ministers commit to patient reported measures of performance

We need to invest in measures that will help us assess whether our health systems deliver what matters most to people.1 So said the health ministers from various Organisation for Economic Co-operation and Development (OECD) countries at a recent meeting in Paris. Reliance on mortality rates and clinical indicators gives only a partial view of the value of health care, they concluded. What people really care about is its impact on their wellbeing and their ability to play an active role in society, so that’s what we should be measuring. And, of course, the only way to do this is to ask patients themselves.

This groundbreaking ministerial statement endorsed plans for a major programme of work on patient reported indicators of health system performance.2 Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs) seem set to become the new currency for comparative performance assessment, but they may have an even more important role in clinical care.

Patient experience surveys elicit feedback on the process of care rather than its effects, focusing on issues such as communication with health professionals, information provision, involvement in decisions, physical comfort, emotional support, and care transitions. Achieving benefit from this resource requires well designed questionnaires and a commitment to act on the results. This is sadly not always the case,3 so the OECD’s championing of such surveys is most welcome. The OECD secretariat has persuaded authorities in 19 countries to adopt a common set of PREM indicators to enable comparison of the quality of ambulatory care, and they plan to extend this approach to encompass other settings, services, and conditions.4

PROMs are standardised questionnaires to elicit people’s subjective reports of the personal impact of illness and treatment, including physical functioning, ability to maintain daily activities, and emotional wellbeing—in other words, health related quality of life. The results can be compared with previous measurements from the same individual or group (to measure change over time) or with those from a reference group or sub-groups (to compare against an external norm or standard).

The OECD report details challenges that must be overcome if PREMs and PROMs are to be used to compare health system performance across countries. These include achieving consensus on what to measure and how to measure it; selecting appropriate instruments; identifying suitable sampling frames; controlling the quality of data collection; avoiding response bias; and minimising survey fatigue.

If we are to focus on what matters to patients then patients must be involved in determining which health outcomes to measure, yet this is surprisingly rare. A recent review of studies describing the development of 193 different PROMs found that only 21 (10.9%) of these had actually asked patients which outcomes were worth measuring.5

A particular challenge is to measure outcomes of care for people with long term conditions, especially those living with multi-morbidities. In this case, professional interventions should be focused on helping people to self manage, prevent exacerbations, and achieve their personal goals, so indicators focused on physical functioning may not be particularly relevant. When these patients are consulted on what is important to them, they highlight issues such as the ability to live well despite their health condition, minimising dependency and treatment burden, participating in meaningful activities, reducing stigma, avoiding loneliness, and having a sense of control over their daily life.6 We need to use PROMs that encompass this broader view of health and wellbeing.

Multi-purpose applications of PREMs and PROMs—using them in individual clinical care and aggregating the data for performance assessment—remains largely aspirational at present,7 but in mental health the Improving Access to Psychological Therapies (IAPT) programme is making strides in this direction.

This programme for treating people with anxiety and depression has shown how PROMs can be used both as a clinical tool to inform the management of individual patients, and as key performance indicators across a programme that treats nearly a million patients in England each year. A standard minimum dataset provides meaningful information for both clinicians and patients, including PROMs collected at each session. PROMs scores are used both as screening tools to confirm a diagnosis, and as outcome measures to assess recovery rates. Up-to-date information on individuals’ progress is used to plan interventions, and the programme is beginning to generate impressive results.8

Encouraging clinicians and patients to make greater use of these tools in regular care may prove fruitful. They could help to improve communications, drawing attention to quality of life issues that might otherwise be missed; to inform patients and clinicians about likely treatment outcomes as part of a shared decision making process; and to develop and monitor personalised care plans.9 Their use in virtual clinics—where patients complete PROMs online to enable remote monitoring, thus avoiding unnecessary hospital appointments—is another potentially exciting application.10

The use of patient reported indicators has great potential, but many clinicians still need to be convinced of their validity and utility.11 They will want reassurance that the process can be fitted into care pathways without causing disruption, and that any conclusions based on aggregations of the data are valid. Patients will want to be assured that the time they spend completing PREMs and PROMs questionnaires will be rewarded by better care.

Commissioned, not peer reviewed

I have read and understood the BMJ’s policy on declaration of interests and declare the following interests: I have contributed to academic studies of PREMs and PROMs


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