We’ve been measuring the same thing for a long time, but what do patients want? Robert Elias Consultant Nephrologist King’s College Hospital, Lon
Dec 31, 2015
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
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.
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 differentlye.g. Information Involvement
Clinical model Information about clinical alternatives (especially outcome measures) Adequacy and quality of provision Involvement Patient choice
Information Involvement
For these patients Information about what their possible futures will be like Being brought into the conversation Personalised care
Involvement (=choice)
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.)
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
How ‘patient-friendly’ is an organisation?
• Description– Activity of KPA– Availability of peer support– Availability and quality of information
• Assessment– Patient feedback
• www.patientopinion.org.uk• www.iwantgreatcare.org
– ‘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: 435-436
Measure organisational culture
• Moral climate
• Moral distress
• Clinician feedback– Would you recommend this service to a
friend or family?
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;7179:323-325. • Greaves F et al. Associations between web-based patient ratings and objective
measures of hospital quality Arch Intern Med 2012; 172: 435-436• Jeffery R. Normal Rubbish: deviant patients in casualty departments Sociology
of Health and Illness 1979;1:90-107• 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: 10.1503/cmaj111355
• Mulley A, Trimble C, Elwyn G Patients’ perceptions matter: stop the silent misdiagnosis King’s Fund 2012