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Tessa Richards: Power to the people—via Paris

Tessa_richardsWho gets to define value in health systems? The notion that it should be the people who use their services, rather than those who provide them, is gaining momentum. At a meeting in Paris this week, convened by the Organization for Economic Co-operation and Development (OECD), revolutionary zeal was in the air as speakers urged health ministers to back the nascent science of “measuring what matters to patients,” and use the metrics to improve the performance of their systems.

The politicians listened. After a closed debate on the challenges facing health systems, led by Jeremy Hunt, secretary of state for health in England, ministers from the 35 OECD countries and nine other countries signed a lengthy statement on the “Next generation of health reforms.” It includes a pledge to support the systematic collection of validated and comparable cross country  indicators of service quality and value—as defined by patients—and use them as a yardstick to compare health systems performance.

That the idea of ranking a country’s health system by how much patients and the public believe they deliver should be regarded as revolutionary, speaks volumes. Not just about the nature of healthcare, but also the power imbalance between patients and health professionals.

But old hierarchies are changing. Public trust in health services and the professionals who work in them is waning. There is growing awareness and concern about health systems wicked problems: inequity in access to services, high rates of avoidable error, and the overuse of tests and treatments.

“We have got to the stage,” Don Berwick of the Institute for Healthcare Improvement, warned in an early salvo to the meeting, “where society is saying what’s going on in healthcare? Healthcare professionals feel threatened.”

Recent publications on the level of waste and harm in health systems include the OECD  report published last week on “Tackling Wasteful Spending on Health.” Angel Gurria, secretary general of OECD, an impressive speaker with a Reverend Ian Paisley style of delivery, fired off some of it’s depressing statistics.

“The poor are ten times more likely [than the rich] to report unmet health needs for financial reasons. One in ten people are effected by preventable disease, error, or substandard care. One in four experience poorly co-ordinated care,” he said. Only one in four? A few participants murmured

He went on.“We must stop judging health service performance by what services do,” he said. “We need patients to tell us if and how the services they access improve their physical health, mental health, functional status and quality of life.”

The OECD has recently published the recommendations of a high level expert group on how to collect reliable internationally comparative data that provides a better indication of the outcomes of care from the patient’s point of view. Now it has the mandate to advance the so called PaRIS (Patient reported indicators of health system performance) work which it’s doing in partnership with ICHOM, the International Consortium for Health outcomes.

As with all metrics, the devil is in the detail. There is undoubtedly much to be learnt from systematically collecting PROMS and PREMs (patient reported outcomes and experience measures). But as Diana Delnoij, from the Netherlands National Health Care Institute underlined, the science of how to measure them must be improved, and patients fully involved in deciding what to measure, and how.

New indicators are needed, she suggested to assess performance that matters to them such as “being treated with respect, and receiving co-ordinated care.”

They also value continuity, good relationships with staff, being supported and empowered to self manage their own care, and better use of digital technologies. Giving patients access to e-health records so they can input PROMS and PREMs in real time, should help, other speakers suggested.

But it will take more than a TripAdvisor approach to gain full insight into patient’s perspectives of good quality care and identify the outcomes they value. Preferences, priorities, and expectations can change over time, especially for patients living with long term conditions, as Atul Gwande’s recent compelling article on Incremental Care, illustrates.

Gwande describes the case of Bill Haynes (not his real name), a 57 year old man with uncontrolled and hugely debilitating migraine. Since the age of 19 he saw many doctors and tried a panoply of medications and whacky “cures.” Some gave short term benefit, and  “real time” PROMs and PREMs measures would likely have recorded that. But none helped in the longer term. What has is meeting Elizabeth Loder, a neurologist who runs a specialist headache clinic (and also works for The BMJ as Head of Research) .

She listened to his story, exuded “confidence and a maternal concern,” suggested she could help, but that he needed recalibrate his expectations. At repeat visits, she provided support and made minor incremental changes to his regime. Over time, it changed his life around. The challenge for metricians is to capture the benefits of a service like this, because from the patient’s perspective it’s like gold dust.

Michael Porter, professor at Harvard Business School, was not in favour of an incremental approach to developing and using patient reported indicators.

“The only definition of a successful health system is one that produces value for patients. We must establish global standard sets of outcomes, condition by condition. There is no excuse for inaction,” he said.

Could PaRIS (Patient‑Reported Indicators Survey (PaRIS) become as influential in spurring effective reform of health systems as PISA appears to be in education? (PISA is the tool the OECD uses to rank countries by 15 year old’s reading, maths, and science skills).

For patients and health professionals weary of  the promise of “new tools and reforms to transform” health care we can only hope so.

Tessa Richards, Patient partnership editor, The BMJ.

More information on the OECD Health Ministerial Meeting and Policy Forum on the Future of Health is available at www.oecd.org/health/ministerial/.