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Patient-centred Healthcare

What should it really look like?

Written by: Sir Donald Irvine, Chairman, Picker Institute Europe. Published: 3rd June 2010

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As a child in the late 1940’s I spent severalmonths in bed with rheumatic fever andpericarditis. It was a serious illness for whichthere was then no effective treatment. Ihave never forgotten my mother’s devotednursing care or the kindly paediatricianwho always made me feel as though I wasthe only patient who really mattered tohim. For them, care was all because therewas nothing else they could do. Now fastforwardto 2009, and contrast their attitudeto care with the outlook of a nursing teamleader – also a conscientious woman – whoshocked me recently when she said that she‘didn’t need to care to do her job properly’.She sees herself as a technician, but is shereally patient-centred?

These two anecdotes illustrate the challengeto modern health care. In the intervening70 years healthcare in the Western world,and societies themselves, have changedout of all recognition. We all know the story.Dominating everything, we have seen, andcelebrated, the wonderful, relentless onwardmarch of medical science and discoverywhich has made it possible for healthprofessionals to diagnose, treat and cureor alleviate the clinical effects of illness asnever before. Inevitably, given the relativepowerlessness of patients, an all pervasivemedical and health policy culture hasevolved primarily around doctors’ clinicaland scientific interests and priorities, whichare not always exactly the same as patients’.At the same time the increasing complexityof much care, and pressures of demand,have made it more difficult for healthprofessionals and patients to establish andsustain the relationships essential to thebuilding of trust.

New science and new ways oforganising care, welcome in themselves,nevertheless come at a price we haveonly recently acknowledged. For somehealth professionals, their professionalorganisations and the institutions inwhich they work, the so-called ‘soft’ partsof healthcare, basically about attitudes,relationships and communications havetended to be seen as less important, lessinteresting and less relevant than the hardscience of clinical outcomes and clinicaleffectiveness. One result is that patientsreport wide variations in their experienceof care. Even in the same episode of illnesssuch experience can range from excellent tounacceptable. Actually patients have alwayswanted the best of science and the best ofcare – for them they are not alternatives.They tolerated the dichotomy because, untilrecently, they have never had sufficientinfluence or power to do much about it.

A big step forward came in the early 1980’swhen the late Harvey Picker, an Americanscientist and philanthropist, and his wifeJean who suffered from a serious, relapsinginfection, decided to try to adjust thebalance. From their own experience theycould see that, whilst the US healthcaresystem was strong on medical science, itnevertheless left much to be desired in termsof its humanity and ability to be responsiveto the experience of illness as seen “throughthe patient’s eyes”. So, to raise the profile ofwhat they called ‘patient-centred healthcare,’they decided to enlist the aid of science.

They endowed the Picker-CommonwealthProgram for Patient-Centred Care, fromwhich the Picker Institutes evolved. Locatedat Boston’s Beth Israel Hospital and HarvardMedical School, the programme’s mainthrust was to devise new instruments andnew scientific methods for measuring,assessing and comparing patient experienceagainst seven carefully developeddimensions of patient-centred care in thehospital setting. The results of this basicresearch provided ammunition for theemerging patient-centred care movementand has underpinned our understanding ofand ability to measure patient experience inthe NHS today.

In the last ten years the policy argumentfor regarding patients’ expectations andexperiences as fundamental elements ofhealth care quality has been won on bothsides of the Atlantic. Now the focus is ondelivery, the subject of the Conference onQuality, Governance and Experience to beheld on 17th December 2009 in London.

What will it really be like?

My expectation is that patient-centred carein the NHS and private sector will include thefollowing:

1. Full acceptance of the fact and thepractical implications of patientautonomy by Parliament and allproviders. The patient becomes theactive focus of a partnership in care, nota passive recipient. That means their fullinvolvement in decisions about theircare – “no decisions about me withoutme” as Harvey Picker was often heard to say.
2. A thorough understanding of whatconstitutes patient-centred care at anypoint in time which is based on solid,well – publicised evidence gained frompatients and the public as well as healthprofessionals and policy makers. Healthprofessionals and institutions will havea clear idea of the standards of careexpected of them, and the public willbe equally clear about what patients areentitled to expect.
3. That understanding will be absorbedfully into the culture of individual healthcare professions, their educationalorganisations and their regulators, andinto the governance of every hospitaland general practice.
4. Since patients do not choose to beill, and medical investigations andtreatment can often be painful,frightening and distressing, it willbecome a given that the process ofcare - which is largely in the handsof providers – should be exemplary,and never of itself become a cause forworry and concern to patients or theirrelatives.
5. Measures of patient experiencewill therefore be accepted as validexpressions of quality in their ownright, not conditional on establishing arelationship with clinical indicators or abusiness case.
6. Patients and the public will have directaccess to a comprehensive range ofgeneric and specialty- specific metricsof clinical performance at the team andwhere possible individual clinician level,with an emphasis on clinical outcomesand patient experience.
7. In terms specifically of experience data,near real-time feedback at the level ofclinical teams and individual clinicianswill replace point in time surveysvery quickly. If used imaginativelythere is huge new scope for qualityimprovement.
8. More generally, all concerned withhealth care will make far moreextensive use of the Internet as data onthe performance of individual cliniciansand clinical teams becomes available,enabling them to benchmark againstnational and international peers.
9. That will give patients, potentially,much more scope for deciding whomto choose for their care in future.Equally, it will challenge providerswho are bound to become moreconcerned to protect and enhancetheir reputation as their performance islaid out for all to see.

Marrying the imperative to constrain costswith the necessity for the best possibleoutcome in clinical terms into an approachthat is truly patient-centred is likely to be oneof the most significant but fundamentallyimportant challenges facing healthcareorganisations over the coming years but therewards of achieving it are priceless. So thereis the challenge!