Post on 16-Mar-2020
Personalised care – is it achievable?
Jessica Corner
Dean of Faculty of Health Sciences, Chief Clinician, Macmillan Cancer Support
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Personalised care – what do I mean?
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What patients want – Fast access to reliable health advice
– Effective treatment delivered by trusted professionals
– Participation in decisions and respect for preferences
– Clear, comprehensible information and support for self-care
– Attention to physical and environmental needs
– Emotional support, empathy and respect
– Involvement of, and support for, family and carers
– Continuity of care and smooth transitions
Picker Institute 2007
Personalised care • Compassion
• Empathy
• Responsiveness to needs, values and expressed preferences
• Co-ordination of care
• Information and communication
• Physical comfort
• Emotional support
• Involvement of family and friends
Institute of Medicine (2001)
A decade of addressing personalised care in cancer
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Engagement and involvement at every level
• Cancer networks
• Patient forums in Networks and Trusts
• Peer review of services in Cancer Centres by the National Cancer Action Team
• Consultation with service users as key stakeholders for policy decisions
• Committees, working groups and decision making has service user representation
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Advanced communication skills training
• 3 day workshop training
• members of multidisciplinary teams
• 7,000+ trained to date
Information and support centres
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Addressing access to a clinical nurse specialist
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How are we doing?
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Measuring outcomes
Cancer Patient Experience Survey Advisory Group
– Responsible for measuring and monitoring improvements in patients experience and making recommendations on the basis of this
– Data available to commissioners and the public on the quality of patient experience as key indicator of performance
– Developing sensitive indicators locally owned but also for national benchmarking
– Patient report outcomes (PROMS)
• 158 Trusts surveyed • One of the largest cancer surveys in the world • 109,477 patients surveyed: treated January-
March 2010 in each Trust • Patient definition: inpatient or day case; with
primary cancer diagnosis;
Methodology
• Questionnaire and cover letter asked patients to refer to treatment at the Trust named on cover letter
• First survey to cover rarer cancer
• First survey to use word “cancer” explicitly • Response Rate 67% (67,713): National inpatient survey
52%
Overall patients are positive – Patients overall responses positive – 80% or over on 33
of 59 scored questions – On 12 questions, cancer patients scored 70% or lower: 6
questions on information; 2 on nurses; 3 on integration of care across sectors and professions; 1 on waiting times in outpatients
– On comparable questions, cancer patients are more
positive than general hospital inpatients
– Rarer cancer patients have less positive experience
But variation in experience of care is significant
– Significant variations by Trust: e.g. given name of CNS - range is 97% to 59%
– 12 Trusts had no instances where patients rated them in
bottom 20% of Trusts on individual questions – 34 Trusts had 20 or more instances where they were rated
in the bottom 20% by patients: 18 of these were in London
We can’t see big change over time
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Knowing the name of a clinical nurse specialist has a significantly positive impact
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But Age, Gender, and Ethnicity are linked to poorer experience of care
Age : • Youngest age group 16-25 usually the least positive • But: 75+ group least likely to be given name of CNS
Gender : • Smaller scale differences than other variables • Men more positive about staff, privacy, respect and
dignity, told enough, discharge, written information on type of cancer, free prescriptions
Ethnicity : • On 21 questions white patients more positive • Receiving information, confidence and trust in ward
nurses and pain control are examples of this finding
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Trust level reports
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Trust level reports
Macmillan league table
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We are facing a major loss of confidence in nursing and the quality of personal care
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What is the picture across Europe?
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Evaluation of a complex intervention to improve experienced continuity of care (King et al BJC 98, 529-536, 2008 and BJC 100, 274-280 2009)
• Elements of continuity:
– Infomational
– Management
– Relational
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Concluding thoughts • Delivering personalised care is complex
• Involves multiple actions at the level of individual, organisation and system
• Skills, commitment and culture
• Ethos and values
• Placing power in the hands of individuals who are ill
• Self care and care of ‘selves’
• We are in danger of going backwards rather than forwards without concerted action
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