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/.

  • Mark Taylor

    “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.”

    I wonder whether we need to stop judging health and clinical research in similar, tradional ways. Research can take 10 or 15 years to have an impact but should we now be looking to explain the impact of research more from a patient experience point of view? Do we need to think in terms of patient reported impact measures (PRIM) for research too?

  • ePatient_Dave

    This is such a thought provoking issue! We are in an era not just of unprecedented changes in the patient-professional role but even unprecedented questions about who’s fundamentally capable of what. This sense is amplified by my being in the middle of Samuel Arbesman’s delightful and stimulating book The Half-Life of Facts, whose scope is in truth far broader than its title.

    The current chapter is “Hidden Knowledge,” looking at centuries of stories about knowledge that’s been documented in the literature but not known to people in other fields, or hasn’t been cobbled together into new realisations. Example: paper 1 says fish oil boosts circulation; paper 2 says poor circulation leads to Raynaud’s Syndrome; Lawson connected them, leading eventually to using fish oil for Raynaud’s.

    The parallel with your post is that perhaps the only source of best advice is not the current leading authorities. Perhaps there are other sources of valuable insight, and perhaps – to your post – there are even alternate sources of what is valuable. Could it be the patient, with no medical education?

    Certainly patients are the ultimate stakeholder – the ones with the biggest stake in how well the enterprise succeeds. And yes, to assess whether a service is done well, let’s ask the person who has the need. Since 2009 I’ve been asking about this in speeches. Sampless:

    • Who gets to say what “quality” is? This first arose for me in January 2011 when an article in Archives of Internal Medicine said EMRs did not improve care quality … it turns out they defined “quality” as not prescribing the wrong thing! To a family that’s hardly a quality metric – it’s bare minimum for “tolerable” – and the headline should have said EMRs didn’t reduce physician prescribing errors.

    • Who gets to say whether care and caring have been achieved? This question usually isn’t even asked, but right-minded care designers are starting to.

    • Re lab results and biometrics, I asked: “if the microscope’s happy but the patient’s not, has care been achieved?” (I was involved in a National Quality Forum project to define measures of patient-centred care, and amid all the countable things, we ultimately recommended asking “Did you feel like you were taken care of?”

    • Who gets to say which outcomes matter? Of course this has been part of the BMJ patient partnership since 2014, and is the (sometimes difficult) objective of PCORI.

    • Who gets to say whether a surrogate endpoint is appropriate? Shouldn’t the patient’s perspective be included when deciding whether one is an acceptable proxy for care or cure?

    The traditional view is that only the highly educated professional has the capacity to mull such posers, but activist patient voices ask: Is it fair to put responsibility for this on the shoulders of clinicians or the system designers? Let patients help!

    Happily there are signs of change. Another is that Nature‘s American Journal of Gastroenterology has announced an entire issue on Putting Patients First. Their call for papers calls it “a special issue entirely dedicated to research highlighting the patient perspective.”

    The tide is turning, or at least a dry spot’s opening in the Red Sea. Let’s push forward – the BMJ’s leadership in this should be more broadly spotlighted, and the BMJ should continue to advance the field’s thinking.

  • Amy Price

    My suggestion is to agree on value added for all. Work to make it happen together. I agree with understanding “who gets to say” Where were the quotes from patients at OECD?

    It is better to plan early and with patients than to labor over a house that is built for them that is not fit for purpose.


    Incremental medicine, persistence and empathy as practiced by the example of Dr Loder and Mr Haynes does that. Better yet this care is within the reach of any patient and health provider who cares to practice it and it cuts across and beyond cultural boundaries, limited resources and bureaucracy. Incremental care uses what is available to produce its own future and to provide service within its means. How can OECD further this process?


    The quotes below capture the rawness and reality of medicine in practice. Let us all do our part where ever life places us:

    “The application of what we know already will have a bigger impact on health and disease than any drug or technology likely to be introduced in the next decade” Sir Muir Gray

    “I think we learn from medicine everywhere that it is, at
    its heart, a human endeavor, requiring good science but also a limitless curiosity and interest in your fellow human being, and that the physician-patient relationship is key; all else follows from it.”
    Dr Abraham Verghese