Health systems collect vast amounts of data—how many patients were treated, what services were delivered, whether clinicians followed guidelines, and how much was spent. We typically measure survival rates, or rates of cure after treatment, as a marker of success. But these indicators do not tell us enough about people’s recovery and ability to get back to their usual activities which, ultimately, is what we expect from healthcare. In the last decade, for example, knee replacements have doubled from 60 per 100,000 people to 120 on average in OECD countries. But not all these interventions may be justified if a patient’s ability to work, look after their family, or do whatever matters to them, is no better after the operation compared to before.
Collecting data on clinical outcomes, like mortality and complications, is essential, and the OECD is contributing in providing comparable indicators on them. But we also need to know about the outcomes that matter from a patient’s point of view if we are to strengthen the capacity of clinicians and policymakers to provide health services shaped around patients’ needs. And this can only be done by asking the patients themselves what they think of healthcare quality.
Progress has recently been made on this front and a number of health systems, particularly at local level, are starting to collect “patient-reported outcome measures” (PROMs) and “patient-reported experience measures” (PREMs). PROMs systematically ask people to report back on outcomes that matter to them, whether treatment reduced their pain, for example, or helped them live more independently. PREMs complement this information by asking people about their experience of being treated, for instance, whether the treatment was properly explained to them, or if they felt involved in decisions about their care.
However, work in this area faces hurdles. For instance, although validated data sets of the most important outcomes by disease have been developed by the International Consortium for Health Outcomes Measurement (ICHOM), each health system continues to pursue its own path, leading to fragmentation which greatly narrows the scope for cross-country comparative analysis of outcomes. This means that opportunities to identify excellence, support poor performers and drive improvements across the board will inevitably be missed. Moreover, there is a glaring gap to fill, too, in that the biggest users of healthcare–people with multiple, long-term conditions–are typically not included in PROMs and PREMs initiatives at all.
The OECD can play an important role in addressing these issues. In particular, by emphasising the substantial benefit from standardising PROMs and PREMs across countries, and recognising the OECD’s leadership in reporting health system performance measures, the OECD is well placed to take forward international work to extend and deepen the benchmarking of health system performance through patient-reported indicators.
Indeed, after in-depth discussions with a high-level reflection group, involving leading experts in measuring and driving health performance improvement, and with member countries, the OECD requested a mandate from health ministers at their meeting on 17 January 2017 to develop an exciting new global initiative, the Patient-Reported Indicators Survey, or PaRIS for short. PaRIS aims to devise new tools to improve healthcare policy and practice, and build a people-centred view of health system performance. It will be done in two ways. First, in conditions where patient reported indicators are already used, such as in care after a stroke or heart attack, in cancer care, and in hip and knee surgery, PaRIS will work with countries to accelerate the international monitoring of standardised PROMs and PREMs. Second, in conditions where PROMs and PREMs are rarely used, PaRIS will develop new patient-reported indicators. Priority groups in this case are patients with chronic conditions such as diabetes and dementia and, in particular, patients with several conditions at once, as these require complex care. PaRIS will survey both patients and carers directly, and issue new state of the art indicators on health system performance.
This is a challenging, multi-year project that will depend on close collaboration with international partners such as the European Commission, the World Health Organization, the Commonwealth Fund and the International Consortium for Health Outcomes Measurement. All stakeholders stand to benefit, particularly patients, by helping them assessing what treatments are the most likely to benefit them, and clinicians who will have critical data on how to improve the care they provide. Policymakers will also benefit from PaRIS, by having better information on where to focus quality improvement efforts and prioritise spending.
So, to return to my opening question, when is healthcare successful? For me, the answer is clear: when patients state that their well-being is better as a result. Through PaRIS, we will capture the vital information required to build successful healthcare systems that are truly responsive to patients everywhere.
©OECD Observer No 309 Q1 2017
Article updated 21/02/2017