‘Using lived experience, including consumer experience data to inform improvements in health services with a focus on reducing health inequities for Māori, Pacific peoples and disabled people.’
– The code of expectations for health entities’ engagement with consumers and whānau
Video resources
Find out more about consumers’ lived experience and health service improvement
Inclusion of consumers’ lived experience is essential to the development and evaluation of health service delivery and to making quality improvements in the health system. Lived experience can be shared for large- or small -scale routine or improvement projects – for example, in developing a strategic plan for future hospital services, or for improving the experience when a person is donating blood.
It is important to gain perspectives from all groups of consumers using or contributing to planning your health service. Consumer age, ethnicity, language, sexual orientation, socioeconomic status and gender should be considered so a diverse range of consumer voices are heard.
To address existing health inequities, include the voices of Māori, Pacific peoples and disabled people who currently use or could make use of your service.
Consumers, whānau and communities experiencing inequities have experience of systems and services that have failed to meet their specific needs. To better understand and respond to these needs, health entities need to engage with the experiences of consumers and whānau and include their expertise at every level of decision making. This also requires providing culturally safe ways of participating and engaging to share their lived experience.
Lived experience information can be gathered as qualitative or quantitative data. People with lived experience can also share their experience as part of project or service planning meetings, or in governance roles, for example.
Qualitative data gathering often uses methods such as interviewing, focus groups or survey responses to capture people’s lived experience.
Quantitative data focuses on systematic measurement of patient experience through collection and analysis of numerical or statistical data. This may involve use of existing statistical data sets or use of data collected from polls, questionnaires or surveys. See the questions on patient experience measures and patient reported outcome measures for more information and Aotearoa New Zealand examples.
Lived experience stories can help others make sense of their own health experiences. They can also highlight where and how services could be improved to meet peoples’ needs.
Storytelling is an important part of many cultures, including for Māori and Pacific peoples, so it may be a preferred way of contributing for some people. This could be, for example, through an individual interview with whānau and other supporters. Focus groups or workshops involving people who have similar conditions or health service experiences may also be used to gather patient stories.
In addition to overall analysis of information gathered to suggest health service change, one or more individual stories can be used as reference case studies or used to create patient journey ‘maps’ or scenarios and personas to help guide service improvement. Patient journey mapping describes typical steps that occur as a patient experiences a specific health service.
Consumers who share their lived experience should be able to choose when, where and how they would like to share their unique experience.
They may be concerned that sharing their experience may affect their future care; they should be reassured that their contribution will be confidential and future care will not be impacted.
If consumers are sharing their lived experience via a face-to-face discussion/interview or hui/focus group, all participants must agree to maintain the confidentiality of the discussions. Sharing experiences may be emotionally charged and this should be respected and handled with sensitivity for the individual and within the group.
For more information on supporting consumers see the online module Co-design in health: Supporting consumers, whanau and communities to contribute to co-design.
One way of capturing lived experience data in a standardised manner is through patient experience measures.
Patient experience is a good indicator of the quality of health services. Patient experience feedback is considered by the government as a core measure of progress against the objectives of key health policy documents – Te Pae Tata and Whakamaua (the Māori Health Action Plan 2020-2025).
Te Tāhū Hauora Health Quality & Safety Commission, with its survey provider, Ipsos, conducts two patient experience surveys for the Aotearoa New Zealand health sector:
- the adult primary care patient experience survey
- the adult hospital inpatient experience survey.
Data from these surveys is available as feedback for staff and for service improvement projects (see Resources section), as well as to inform health policies and programmes. Information can be reviewed by ethnicity, gender, age and disability status.
The adult primary care patient experience survey gathers information about patients’ experience of the care they receive in primary care and how their overall care was managed between their general practice and other parts of the health system. Every three months, a sample of adult patients (15 years and over) enrolled with and seen by participating general practices are invited to take part.
See: www.hqsc.govt.nz/our-data/patient-experience/adult-primary-care-patient-experience/
The adult hospital inpatient experience survey gathers information about the experience of care received by a selection of adults aged 15 years and over who stayed at least one night in a public hospital during the survey period.
See: https://www.hqsc.govt.nz/our-data/patient-experience/adult-hospital-inpatient-experience/
A ‘patient reported outcome’ is any report of the status of a patient’s health condition that comes directly from the patient, without interpretation by a clinician or anyone else. A patient reported outcome can be measured by self-report or by interview. It is usually captured by means of a patient reported outcome measure (PROM) that may ask a number of questions about specific symptoms or groups of symptoms, physical and mental health, and quality of life.
An example of a project capturing patient reported outcome measures for people following major trauma can be accessed here.
How can consumers’ lived experience contribute to health service improvement?
Inclusion of consumers’ lived experience is essential to the development and evaluation of health service delivery and to making quality improvements in the health system. Lived experience can be shared for large- or small -scale routine or improvement projects – for example, in developing a strategic plan for future hospital services, or for improving the experience when a person is donating blood.
Who can/should contribute their lived experience?
It is important to gain perspectives from all groups of consumers using or contributing to planning your health service. Consumer age, ethnicity, language, sexual orientation, socioeconomic status and gender should be considered so a diverse range of consumer voices are heard.
To address existing health inequities, include the voices of Māori, Pacific peoples and disabled people who currently use or could make use of your service.
How can using lived experience contribute to improving health equity?
Consumers, whānau and communities experiencing inequities have experience of systems and services that have failed to meet their specific needs. To better understand and respond to these needs, health entities need to engage with the experiences of consumers and whānau and include their expertise at every level of decision making. This also requires providing culturally safe ways of participating and engaging to share their lived experience.
How can lived experience information or data be gathered?
Lived experience information can be gathered as qualitative or quantitative data. People with lived experience can also share their experience as part of project or service planning meetings, or in governance roles, for example.
Qualitative data gathering often uses methods such as interviewing, focus groups or survey responses to capture people’s lived experience.
Quantitative data focuses on systematic measurement of patient experience through collection and analysis of numerical or statistical data. This may involve use of existing statistical data sets or use of data collected from polls, questionnaires or surveys. See the questions on patient experience measures and patient reported outcome measures for more information and Aotearoa New Zealand examples.
How can patient stories inform change?
Lived experience stories can help others make sense of their own health experiences. They can also highlight where and how services could be improved to meet peoples’ needs.
Storytelling is an important part of many cultures, including for Māori and Pacific peoples, so it may be a preferred way of contributing for some people. This could be, for example, through an individual interview with whānau and other supporters. Focus groups or workshops involving people who have similar conditions or health service experiences may also be used to gather patient stories.
In addition to overall analysis of information gathered to suggest health service change, one or more individual stories can be used as reference case studies or used to create patient journey ‘maps’ or scenarios and personas to help guide service improvement. Patient journey mapping describes typical steps that occur as a patient experiences a specific health service.
What support should be provided to consumers sharing their lived experience?
Consumers who share their lived experience should be able to choose when, where and how they would like to share their unique experience.
They may be concerned that sharing their experience may affect their future care; they should be reassured that their contribution will be confidential and future care will not be impacted.
If consumers are sharing their lived experience via a face-to-face discussion/interview or hui/focus group, all participants must agree to maintain the confidentiality of the discussions. Sharing experiences may be emotionally charged and this should be respected and handled with sensitivity for the individual and within the group.
For more information on supporting consumers see the online module Co-design in health: Supporting consumers, whanau and communities to contribute to co-design.
What are patient experience measures and how are they used in the New Zealand health sector?
One way of capturing lived experience data in a standardised manner is through patient experience measures.
Patient experience is a good indicator of the quality of health services. Patient experience feedback is considered by the government as a core measure of progress against the objectives of key health policy documents – Te Pae Tata and Whakamaua (the Māori Health Action Plan 2020-2025).
Te Tāhū Hauora Health Quality & Safety Commission, with its survey provider, Ipsos, conducts two patient experience surveys for the Aotearoa New Zealand health sector:
- the adult primary care patient experience survey
- the adult hospital inpatient experience survey.
Data from these surveys is available as feedback for staff and for service improvement projects (see Resources section), as well as to inform health policies and programmes. Information can be reviewed by ethnicity, gender, age and disability status.
The adult primary care patient experience survey gathers information about patients’ experience of the care they receive in primary care and how their overall care was managed between their general practice and other parts of the health system. Every three months, a sample of adult patients (15 years and over) enrolled with and seen by participating general practices are invited to take part.
See: www.hqsc.govt.nz/our-data/patient-experience/adult-primary-care-patient-experience/
The adult hospital inpatient experience survey gathers information about the experience of care received by a selection of adults aged 15 years and over who stayed at least one night in a public hospital during the survey period.
See: https://www.hqsc.govt.nz/our-data/patient-experience/adult-hospital-inpatient-experience/
What are patient reported outcome measures?
A ‘patient reported outcome’ is any report of the status of a patient’s health condition that comes directly from the patient, without interpretation by a clinician or anyone else. A patient reported outcome can be measured by self-report or by interview. It is usually captured by means of a patient reported outcome measure (PROM) that may ask a number of questions about specific symptoms or groups of symptoms, physical and mental health, and quality of life.
An example of a project capturing patient reported outcome measures for people following major trauma can be accessed here.
Resources
This Te Tāhū Hauora Health Quality & Safety Commission webpage hosts a collection of consumer and whānau stories in their own words.
There are short Co-design in Health online modules available including:
- Engaging Māori consumers, whanau and communities in co-design
- Supporting consumers, whanau and communities to contribute to co-design
This toolkit contains a lot of published resources adapted from those first prepared by healthcodesign.org.nz and practical information on gathering and understanding lived experience to inform health service change.
This is a framework to measure what successful consumer, whānau and community engagement looks like and how it improves the quality and safety of services. More information on its use is available here.
This workbook is designed to help you use data from the Aotearoa New Zealand adult primary care patient experience survey to conduct and track the progress of quality improvement initiatives and track the progress of these initiatives.
This workbook is designed to help you use data from the Aotearoa New Zealand adult hospital inpatient experience survey to conduct and track the progress of quality improvement initiatives and track the progress of these initiatives.
These documents describe the process followed by Te Tāhū Hauora Health Quality & Safety Commission to identify key concepts and develop questions to measure patient experience of culturally safe care in the Aotearoa New Zealand patient experience surveys.
This co-designed project included a Māori and a Pacific consumer on the project team and captured lived experience data through interviews and focus groups/hui.
The Atlas of Healthcare Variation displays easy-to-use maps, graphs, tables and commentaries that highlight variation in the provision and use of specific health services and health outcomes, by geographic area.
Our voices | Ō mātou reo
This Te Tāhū Hauora Health Quality & Safety Commission webpage hosts a collection of consumer and whānau stories in their own words.
Online co-design learning modules
There are short Co-design in Health online modules available including:
- Engaging Māori consumers, whanau and communities in co-design
- Supporting consumers, whanau and communities to contribute to co-design
Experience based co-design toolkit
This toolkit contains a lot of published resources adapted from those first prepared by healthcodesign.org.nz and practical information on gathering and understanding lived experience to inform health service change.
Consumer engagement quality and safety marker
This is a framework to measure what successful consumer, whānau and community engagement looks like and how it improves the quality and safety of services. More information on its use is available here.
From PES to PDSA. Workbook: Using adult primary care patient experience survey data for quality improvement
This workbook is designed to help you use data from the Aotearoa New Zealand adult primary care patient experience survey to conduct and track the progress of quality improvement initiatives and track the progress of these initiatives.
From PES to PDSA. Workbook: Using adult hospital patient experience survey data for quality improvement
This workbook is designed to help you use data from the Aotearoa New Zealand adult hospital inpatient experience survey to conduct and track the progress of quality improvement initiatives and track the progress of these initiatives.
Measuring culturally safe care through the hospital and primary care patient experience surveys
These documents describe the process followed by Te Tāhū Hauora Health Quality & Safety Commission to identify key concepts and develop questions to measure patient experience of culturally safe care in the Aotearoa New Zealand patient experience surveys.
Case study: Improving access to diabetes care for Māori and Pacific people in the Western Bay of Plenty
This co-designed project included a Māori and a Pacific consumer on the project team and captured lived experience data through interviews and focus groups/hui.
Atlas of Healthcare Variation
The Atlas of Healthcare Variation displays easy-to-use maps, graphs, tables and commentaries that highlight variation in the provision and use of specific health services and health outcomes, by geographic area.
Further reading
This paper discusses some of the methods and barriers to accessing childrens’ and young persons lived experience of the health sector. See: https://journals.sagepub.com/doi/10.1177/13674935231153430.
This paper reports on the experience of consumer and health care professionals during nine health care improvement projects using co-design. Consumers responses to methods of initial contact and means of capturing lived experience and communication throughout projects provide useful insights. See: https://pxjournal.org/journal/vol4/iss1/4/.
Foster M, Blamires J, Moir C, et al. 2023. Children and young people’s participation in decision-making within healthcare organisations in New Zealand: An integrative review. Journal of Child Health Care. DOI: 10.1177/13674935231153430.
This paper discusses some of the methods and barriers to accessing childrens’ and young persons lived experience of the health sector. See: https://journals.sagepub.com/doi/10.1177/13674935231153430.
Maher LM, Hayward B, Hayward P, et al. 2017. Increasing patient engagement in healthcare service design: a qualitative evaluation of a co-design programme in New Zealand. Patient Experience Journal4(1):23–32. DOI: 10.35680/2372-0247.1149.
This paper reports on the experience of consumer and health care professionals during nine health care improvement projects using co-design. Consumers responses to methods of initial contact and means of capturing lived experience and communication throughout projects provide useful insights. See: https://pxjournal.org/journal/vol4/iss1/4/.
If you have feedback on the implementation guide, you can get in touch here.
Page last updated: June 2023