Learning from patients’ experience Angela Coulter Picker Institute Europe Angela Coulter Picker Institute Europe

Summary Why measure patients’ experience? Why measure patients’ experience? How to do it How to do it Using the results for quality improvement Using the results for quality improvement Why measure patients’ experience? Why measure patients’ experience? How to do it How to do it Using the results for quality improvement Using the results for quality improvement

Uses of patient/public surveys To improve the quality of care To improve the quality of care To improve health outcomes To improve health outcomes To reduce risk factors and prevent ill-health To reduce risk factors and prevent ill-health To improve safety To improve safety To reduce complaints and litigation To reduce complaints and litigation To understand needs, expectations and priorities To understand needs, expectations and priorities To improve the quality of care To improve the quality of care To improve health outcomes To improve health outcomes To reduce risk factors and prevent ill-health To reduce risk factors and prevent ill-health To improve safety To improve safety To reduce complaints and litigation To reduce complaints and litigation To understand needs, expectations and priorities To understand needs, expectations and priorities

What patients want Fast access to reliable health advice Fast access to reliable health advice Effective treatment delivered by trusted professionals Effective treatment delivered by trusted professionals Participation in decisions and respect for preferences Participation in decisions and respect for preferences Clear, comprehensible information and support for self-care Clear, comprehensible information and support for self-care Attention to physical and environmental needs Attention to physical and environmental needs Emotional support, empathy and respect Emotional support, empathy and respect Involvement of, and support for family and carers Involvement of, and support for family and carers Continuity of care and smooth transitions Continuity of care and smooth transitions Fast access to reliable health advice Fast access to reliable health advice Effective treatment delivered by trusted professionals Effective treatment delivered by trusted professionals Participation in decisions and respect for preferences Participation in decisions and respect for preferences Clear, comprehensible information and support for self-care Clear, comprehensible information and support for self-care Attention to physical and environmental needs Attention to physical and environmental needs Emotional support, empathy and respect Emotional support, empathy and respect Involvement of, and support for family and carers Involvement of, and support for family and carers Continuity of care and smooth transitions Continuity of care and smooth transitions

What citizens want Affordable treatment and care Affordable treatment and care Safety and quality Safety and quality Health protection and disease prevention Health protection and disease prevention Accessible local services and national centres of excellence Accessible local services and national centres of excellence Universal coverage, geographical and social equity Universal coverage, geographical and social equity Responsiveness, flexibility and choice Responsiveness, flexibility and choice Participation in service developments Participation in service developments Transparency and accountability Transparency and accountability Affordable treatment and care Affordable treatment and care Safety and quality Safety and quality Health protection and disease prevention Health protection and disease prevention Accessible local services and national centres of excellence Accessible local services and national centres of excellence Universal coverage, geographical and social equity Universal coverage, geographical and social equity Responsiveness, flexibility and choice Responsiveness, flexibility and choice Participation in service developments Participation in service developments Transparency and accountability Transparency and accountability

Overall, how would you rate the care you received? Measuring satisfaction

Problems with rating (satisfaction) questions Yield positive results, which do not reflect reported experience Yield positive results, which do not reflect reported experience Do not discriminate well between countries, hospitals, units Do not discriminate well between countries, hospitals, units Do not help to identify causes of dissatisfaction or priorities for quality improvement Do not help to identify causes of dissatisfaction or priorities for quality improvement Yield positive results, which do not reflect reported experience Yield positive results, which do not reflect reported experience Do not discriminate well between countries, hospitals, units Do not discriminate well between countries, hospitals, units Do not help to identify causes of dissatisfaction or priorities for quality improvement Do not help to identify causes of dissatisfaction or priorities for quality improvement

Measuring patients’ experience Focus on recent personal experience Focus on recent personal experience Ask patients what is important to them (focus groups and interviews) Ask patients what is important to them (focus groups and interviews) Ask patients to report on what happened, NOT how satisfied they were (surveys) Ask patients to report on what happened, NOT how satisfied they were (surveys) Feed back actionable results Feed back actionable results Compare against appropriate benchmarks Compare against appropriate benchmarks Develop an action plan Develop an action plan Focus on recent personal experience Focus on recent personal experience Ask patients what is important to them (focus groups and interviews) Ask patients what is important to them (focus groups and interviews) Ask patients to report on what happened, NOT how satisfied they were (surveys) Ask patients to report on what happened, NOT how satisfied they were (surveys) Feed back actionable results Feed back actionable results Compare against appropriate benchmarks Compare against appropriate benchmarks Develop an action plan Develop an action plan

Questionnaire development Define scope of survey Define scope of survey Review literature Review literature Focus groups – professionals and patients Focus groups – professionals and patients Cognitive interviews with patients Cognitive interviews with patients Two stage pilot testing Two stage pilot testing Validation tests and scale development Validation tests and scale development Define scope of survey Define scope of survey Review literature Review literature Focus groups – professionals and patients Focus groups – professionals and patients Cognitive interviews with patients Cognitive interviews with patients Two stage pilot testing Two stage pilot testing Validation tests and scale development Validation tests and scale development

Examples of questions When you needed help from staff eating your meals did you get it at the time you needed it? 1  Yes, always 2 Yes, sometimes 3 No 4  I did not need help Were you given enough privacy when being examined or treated? 1  Yes, always 2 Yes, sometimes 3 No

NHS patient survey programme in England 2002 Hospital - inpatients Hospital - inpatients2003 Hospital - outpatients Hospital - outpatients Hospital - emergency Hospital - emergency Primary care Primary care2004 Hospital – inpatients Hospital – inpatients Hospital – young patients Hospital – young patients Primary care Primary care Mental health Mental health Ambulance Ambulance CHD and cancer CHD and cancer2002 Hospital - inpatients Hospital - inpatients2003 Hospital - outpatients Hospital - outpatients Hospital - emergency Hospital - emergency Primary care Primary care2004 Hospital – inpatients Hospital – inpatients Hospital – young patients Hospital – young patients Primary care Primary care Mental health Mental health Ambulance Ambulance CHD and cancer CHD and cancer 2005 Hospital – outpatients Hospital – emergency Primary care Mental health Stroke 2006 Hospital – inpatients Mental health Primary care Stroke rehabilitation

Praise for staff “The staff nurse and doctor who saw me were brilliant. I’ll remember their kindness always.” Emergency Dept Survey

Always treated with dignity and respect by staff (NHS patient surveys, England 2004/5)

Had complete confidence and trust in staff (NHS patient surveys, England 2004/5)

Would have liked more involvement in treatment decisions (NHS patient surveys, England 2004/5)

Explanation of test results “I have never had any contact about the results of my tests. I feel totally ignored and let down.” Outpatient Survey

Insufficient information about medicine side-effects (NHS patient surveys, England 2004/5)

Most common problems Not enough involvement in decisions Not enough involvement in decisions No one to talk to about anxieties and concerns No one to talk to about anxieties and concerns Tests/treatments not clearly explained Tests/treatments not clearly explained Insufficient information for family/friends Insufficient information for family/friends Insufficient information about recovery Insufficient information about recovery Not enough involvement in decisions Not enough involvement in decisions No one to talk to about anxieties and concerns No one to talk to about anxieties and concerns Tests/treatments not clearly explained Tests/treatments not clearly explained Insufficient information for family/friends Insufficient information for family/friends Insufficient information about recovery Insufficient information about recovery

Benchmarks

Using survey results to improve quality in an English hospital (1) Patient survey improvement group Patient survey improvement group Focus on improving information for patients, especially written materials Focus on improving information for patients, especially written materials Staff nurse development program over 2 years Staff nurse development program over 2 years

Using survey results to improve quality in an English hospital (2) Set up a multi-disciplinary Safer Medications Group, including primary care trust staff New trust policy that all new patient information leaflets must include information about risks as well as benefits of treatment Trust-wide training in risk management

Factsheets

Improvement guides

Database of good practice

Patients Accelerating Change National programme jointly sponsored by Picker Institute and NHS Clinical Governance Support Team Worked with 72 acute Trusts since rd phase began October 2005 Expanding into primary care and mental health

"It was good and encouraging to be able to spend some time with other people with similar beliefs and goals" "...very inspiring and thought- provoking. The Patient Consultant literally made you see things through different eyes"

Let’s Celebrate!

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