We’ve been measuring the same thing for a long time, but what do patients want? Robert Elias Consultant Nephrologist King’s College Hospital, London

Anne’s experience

What do patients want? People have diverse needs. Each person’s experience is unique and personal. But it is a question open to empirical research. Challenge of reaching the least engaged patients.

Much of experience is not reducible

Stories and qualitative research –We share stories routinely. –We use ‘heuristics’. –We construct ‘cases’.

Clinicians and clinical culture The ‘construction’ of disease [Atkinson] The dominance of technology [Fox and Swazey] The reluctance to prognosticate [Christakis] The ‘normal rubbish’ [Jeffery]

Speaking different languages: Translating biomedicine into personal experience Clinicians and patients construct decisions differently e.g. Information  Involvement

Information  Involvement

Qualitative research with renal patients Qualitative methods exist to analyse stories and provide robust thematic analysis. For example: –Morton et al BMJ 2010 Peer influence Timing of information Maintaining the status quo –Morton et al CMAJ 2012 Discrete choice experiment Patients were willing to forego 7 months life expectancy to reduce number of visits to hospital and 15 months to increase their ability to travel

Improving the quality of patient experience is an end in itself Care is an end in itself; the patient’s experience of a clinic appointment is itself an ‘outcome’. (But not one we measure.)

The Renal Registry frames the conversation

From theory to practice

Measurement challenges We need to triangulate, using a number of different methods to build a composite picture: Outcomes –Variation –Activation/satisfaction –Targets Process –Evidence of system (use of tool/documentation) –Evidence of assessment (PROM) Training –Evidence of training/sustainability Governance

What can we measure? We can and do measure: –PREMS –PROMS –Shared decision-making –Hospital inpatient survey

Evaluation tools Measures of patient activation Measures of consultation quality Routine 360 degree feedback (part of appraisal and revalidation) Decision quality measures Decisional conflict measures Patient feedback Clinician feedback Traditional ‘Outcomes’: e.g. uptake of modalities/ morbidity/ mortality/ quality of life

What services are there? How are they organised?

How ‘patient-friendly’ is an organisation? Description –Activity of KPA –Availability of peer support –Availability and quality of information Assessment –Patient feedback –‘How are we doing’ scores

Web-based rating obtained from spontaneous patient feedback on NHS Choices website. Clinical outcomes obtained from Dr Foster, NHS Comparators, and Health Protection Agency Greaves F et al. Arch Intern Med 2012; 172:

Measure patient activation

Measure clinician activation

Measure decision quality

Measure organisational culture Moral climate Moral distress Clinician feedback –Would you recommend this service to a friend or family?

So, what do patients want?

References Atkinson P Medical talk and medical work Sage 1995 Christakis NA Death foretold: prophecy and prognosis in medical care Univ Chicago Press 2001 Fox RC, Swazey JP The courage to fail: a social view of organ transplants and dialysis Transaction, New Brunswick 2002 (new edn) Greenhalgh T Narrative based medicine in an evidence based world. BMJ 1999;7179: Greaves F et al. Associations between web-based patient ratings and objective measures of hospital quality Arch Intern Med 2012; 172: Jeffery R. Normal Rubbish: deviant patients in casualty departments Sociology of Health and Illness 1979;1: Morton R, Tong A, Howard K, Snelling P, Webster AC The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies BMJ 2010; 340:c112 Morton R et al Factors influencing patient choice of dialysis versus conservative care to treat end-stage kidney disease CMAJ 2012 doi: /cmaj Mulley A, Trimble C, Elwyn G Patients’ perceptions matter: stop the silent misdiagnosis King’s Fund 2012