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Library Database and Resource Directory
Public Service, Hospital-based support service
Patient and Whaanau Centred Care / Health Literacy Clearinghouse
Contents
Patient experience
Guidelines and Resources
Patient Co-design Portals
Additional Resources and Further Reading
Selected Learning Opportunities
Guidelines and Resources
Selected aids and communication tools developed by NZ DHBs
Health Literacy Portals
Additional Resources and Further Reading
Patient Experience
Guidelines and Resources
New Zealand
Co-designing health research in Aotearoa New Zealand (2024)
Co-designing health research in Aotearoa New Zealand describes a Kaupapa Māori evaluation of five Healthier Lives’ projects. The report outlines the elements needed for authentic co-design of health research with Māori and Pacific communities.
The accompanying short guide summarises the lessons learnt from this evaluation and features a conceptual ladder – the Co-design Research Integrity Poutama – which portrays and defines different levels of co-design.
These documents provide insights for researchers working with Māori and Pacific communities in Aotearoa New Zealand, which we hope will guide more authentic co-design of health research in this country.
Co-designing health research in Aotearoa New Zealand (PDF)
He Pikinga Waiora. Community co-design implementation framework (2024)
Welcome to the He Pikinga Waiora web site. This site introduces a framework for the development, implementation and evaluation of health interventions for Indigenous communities. The web site includes the foundational principles of our framework, stories from people who have used it and participated in an intervention guided by it, and a set of resources and guidelines for how to use it in your own project. We hope these resources will prove to be useful for you as you develop interventions to improve health and enhance health equity in your communities.
The HPW Implementation Framework is a participatory research approach with systems thinking that ensures shared and equitable roles for community members in all phases of implementation and evaluation; it involves co-design; co-data collection, co-implementation, co-evaluation and co-analysis/interpretation.
Code of expectations for health entities’ engagement with consumers and whānau (HQSC, 2023)
The code of expectations for health entities’ engagement with consumers and whānau | Te tikanga mō te mahi tahi a ngā hinonga hauora ki ngā kiritaki me ngā whānau (the code) sets the expectations for how health entities must work with consumers, whānau and communities in the planning, design, delivery and evaluation of health services. This code is required by the Pae Ora (Healthy Futures) Act 2022 and is underpinned by the health sector principles. All health entities must act in accordance with the code and are required to report annually on how the code has been applied.
From knowledge to action: A framework for building quality and safety capability in the New Zealand health system (HQSC, 2016)
A high-level framework to guide the development of quality and safety capability across all levels in the health and disability sector, including consumers/patients.
Engaging with consumers: a guide for district health boards (HQSC, 2015)
This resource is a practical guide to help New Zealand district health boards, and the health and disability services they fund, to engage better with consumers. It covers consumer engagement in the design and delivery of services, as well as the development of policy and governance procedures.
A guide to developing a framework for collecting information from consumers to improve the quality of health and disability services (HQSC, 2012)
This Guide and accompanying Toolkit are designed to assist health and disability service providers in developing and implementing a framework for capturing and using information about consumer experience to undertake service improvements. (…) In New Zealand consumer participation is also included in the Health and Disability Services Standards, which require that consumers and family/ whānau “are involved in the planning, implementation, and evaluation at all levels of the service to ensure services are responsive to the needs of individuals.
From PES to PDSA: A guide to using the patient experience survey portal for quality improvement (HQSC)
From PES to PDSA outlines how to use the patient experience reporting portal for quality improvement. Written collaboratively with the Commission's quality improvement team, this document breaks down Plan, Do, Study, Act cycles into well-defined steps so you can streamline quality improvement activities within your primary health organisation or general practice.
Health Service Co-Design [WDHB]
A guide from Waitemata DHB providing a range of flexible tools for working effectively with patients in service improvement work.
Patient Experience Explorer (HQSC)
HQSC has launched the Experience Explorer, an improved tool for public reporting of results from the national patient experience programme. The explorer provides access to results from the Commission’s adult hospital inpatient experience and adult primary care patient experience surveys.
Co-design in Aotearoa New Zealand: a snapshot of the literature (Knowledge Auickland; 2020)
Co-design refers to a philosophical approach and evolving set of methodologies for involving people in the design of the services, strategies, environments, policies, processes, – that impact them.
This review gathers together readily available local scholarship and literature about co-design in Aotearoa New Zealand up to September 2019. This document is aimed at the practitioners as much as academics and is more a snapshot than a formal academic literature review. Its aim is to:
create a resource to support groups and individuals working in, or commissioning, co-design
make visible for those practising or commissioning co-design in Aotearoa New Zealand the current landscape of formal scholarship and research in this space
provide a benchmark of current research applying to, or about, co-design, highlighting areas for future scholarship and collaboration. As more literature is identified it can be added to this initial review.
International
Partnering with Consumers: A guide for consumers (Australian Commision on Satefy and Quality in Healthcare, 2023)
Developed by consumers for consumers, the Guide explains how to strengthen consumer partnerships at all levels of the health system to support person-centred care and drive positive change. The Guide has been developed by consumers for consumers, with Consumers Health Forum of Australia (CHF) engaged to undertake the co-design process. It explains how to build and strengthen consumer partnerships at all levels of the health system to support person-centred care and drive positive change.
Using social media as a tool to facilitate consumer engagement in service design and quality improvement: A guide for hospitals, service providers and consumers ( La Trobe University, 2022)
‘Using social media as a tool to facilitate consumer engagement in service design and quality improvement: A guide for hospitals, service providers and consumers’ is a guide designed to help hospitals, providers and consumers include social media-based methods into their suite of consumer engagement activities.
Researchers from the Centre for Health Communication and Participation at La Trobe University, along with an advisory committee of consumers and service providers, developed this guide. It draws from findings of a review of international literature, and new research exploring the use of social media as a consumer engagement tool in Australia.
The Patient Experience Library
"We have brought together the whole of the UK's qualitative literature on patient experience. We make as much stuff available free of charge as we can - through our weekly newsletter and through selected Insight reports and Knowledge maps. We also make reports available to download for free, grouped by the month they were added to the Library" - Search the library
The Beryl Institute
The Beryl Institute is the global community of practice and premier thought leader on improving the patient experience in healthcare. *Full text access to resources is limited to Beryl Institute members. Copies of all reports and papers can be requested from the Counties Manukau Health Library.
Engaging Patients in Patient Safety – a Canadian Guide (CPSI, 2017)
While the guide focuses primarily oThe Commission has developed a comprehensive training package for facilitators to use to help new health and disability consumer representatives to prepare for their role. It is designed to support consumers to participate confidently when sharing their views and experiences in decision-making forums across the sector. The training package was updated in 2017 and will continue to be revised to reflect changes to key government documents (such as updated national strategies) and to incorporate new information.n patient safety, many engagement practices apply to other areas, including quality, research, and education. The guide is designed to support patient engagement in any healthcare sector.
Recommendations to OECD Ministers of Health from the High Level Reflection Group on the future of health statistics: Strengthening the international comparison of health system performance through patient-reported indicators (OECD, 2017)
Groundbreaking ministerial statement endorsed plans for a major programme of work on patient reported indicators of health system performance. Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs) seem set to become the new currency for comparative performance assessment, but they may have an even more important role in clinical care.
The Eight Principles of Patient Centred Care
This webpage summarises findings from work by researchers from Harvard Medical School on behalf of Picker Institute and The Commonwealth Fund. It draws on a literature review and wide range of focus groups to identify 8 Principles of Patient Centred Care that are needed to meet the Institute of Medicine's definition of patient-centred care.
Australian Commission on Safety and Quality in Health Care
Person-centred healthcare organisations
The Commission has developed a number of resources to help support healthcare organisations to achieve excellent person-centred care. Including reports, fact sheets and case studies.
Australian Commission on Safety and Quality in Health Care
Patient-centred care: improving quality and safety through partnerships with patients and the community
Australian Commission on Safety and Quality in Health Care
NSQHS Standard 2: Partnering with consumers: Tip Sheets and self assessment tool
Guide to patient and family engagement in hospital quality and safety (AHRQ)
An evidence-based resource to help hospitals work as partners with patients and families to improve quality and safety.
Consumer Assessment of Healthcare Providers and Systems (CAHPS)
AHPS surveys ask patients to report on their experiences with a range of health care services at multiple levels of the delivery system. Several surveys ask about experiences with ambulatory care providers such as health plans, physicians' offices, and mental health plans, while others ask about experiences with care delivered in facilities such as hospitals, dialysis centers, and nursing homes.
The CAHPS Child Hospital Survey (Child CAHPS)
Assesses the experiences of pediatric patients (17 and younger) and their parents or guardians with inpatient care. It complements the Adult Hospital Survey, which asks adult inpatients about their experiences. Child HCAHPS covers most of the topics addressed by the Adult version of the Hospital Survey as well as topics that are particularly relevant to pediatric care.
Patient Engagement Resource Hub (Canadian Foundation for Healthcare Improvement)
Hub resources include Canadian and international open source tools. Use them in patient and family engagement initiatives to improve health and healthcare.
Patient and Public Engagement in Choosing Wisely. ( Choosing Wisely Canada. (2019). )
A new toolkit about engaging patients and the public in Choosing Wisely has been published. It includes brief case studies of patient and public engagement in Choosing Wisely campaigns, including in Australia. Twenty-eight cases from 12 countries describe ways campaigns have partnered, engaged, empowered and informed patients, consumers and the public.
Helping measure person-centred care: a review of evidence about commonly used approaches and tools used to measure person-centred care (Health Foundation)
This rapid review signposts to research about commonly used approaches and tools to help
measure person-centred care. It aims to showcase the many tools available for those working in
policy and practice. A spreadsheet listing 160 of the most commonly researched measurement
tools accompanies this review.
Person and patient-centred care
An excellent collection of resources and articles curated by the team at Healthify.
Guide to Improving Patient Safety in Primary Care Settings by Engaging Patients and Families
A compilation of evidence-based best practices for improving patient safety through patient, family, and caregiver engagement. This comprehensive guide provides primary care practices with four strategies that they can adopt to improve patient safety.
Strategies for Patient, Family and Caregiver Engagement. Technical Brief [AHRQ Publication No. 20-EHC017]. Agency for Healthcare Research and Quality (AHRQ). (2020).
This brief applies a framework to create a map of the currently available evidence on patient and family engagement strategies that have been used to help people manage chronic conditions.
Putting the consumer first: Creating a consumer-centred health system for a 21st century Australia: A health policy report. ( George Institute for Global Health & Consumers Health Forum of Australia. (2016). )
This report provides a series of recommendations for change and summarises key discussion points:
• How do we empower consumers and communities to be informed and actively involved in their healthcare and the healthcare system?
• How do we enable and support consumer-centred professional practice?
• How do we enable services and providers to change?
• How do we create the right policy, infrastructure and incentive platforms to drive change and support consumer-centred care?
Helping measure person-centred care. (The Health Foundation, 2014).
A review of evidence about commonly used approaches and tools used to help measure person-centred care. This rapid review signposts to research about commonly used approaches and tools to help measure person-centred care. It aims to showcase the many tools available for those working in policy and practice.
Patient Co-design Portals, guides toolkits etcetera
He Pikinga Waiora. Community co-design implementation framework (2024)
Welcome to the He Pikinga Waiora web site. This site introduces a framework for the development, implementation and evaluation of health interventions for Indigenous communities. The web site includes the foundational principles of our framework, stories from people who have used it and participated in an intervention guided by it, and a set of resources and guidelines for how to use it in your own project. We hope these resources will prove to be useful for you as you develop interventions to improve health and enhance health equity in your communities.
The HPW Implementation Framework is a participatory research approach with systems thinking that ensures shared and equitable roles for community members in all phases of implementation and evaluation; it involves co-design; co-data collection, co-implementation, co-evaluation and co-analysis/interpretation.
Australian Healthcare and Hospitals Association (AHHA)
Experience Based Co-design Toolkit [ AHHA] Australian-developed toolkit developed by the Australian Healthcare and Hospitals Association (AHHA) and the Consumers Health Forum (CHF) will help individual hospitals and healthcare services to provide better experiences of healthcare for both workers and patients. Sets out a process for co-design and includes case studies.
Flip the Clinic is an open experiment to transform the patient-clinician experience. It is where patients and health practitioners improve medical care, together. Find new ideas, join the collaboration, and follow the community’s progress
Health Service Co-Design [WDHB] A guide from Waitemata DHB providing a range of flexible tools for working effectively with patients in service improvement work.
HQSC have developed a suite of free e-learning courses for co-design that are available to all health care professionals through Manatū Hauora | Ministry of Health’s Learn Online platform. Co-design is a tool that brings together consumers, whānau and communities to ensure that multiple perspectives are reflected in the design, delivery and evaluation of services.
Courses:
- Co-design in health: an introduction
- Co-design in health: Supporting consumers, whānau and communities to contribute to co-design
- Engaging Māori consumers in co-design
- Engaging Pacific consumers in co-design
- Co-design in health: How you can be involved – a guide for consumers, whānau and communities
These courses are open to anyone (first-time Learn Online users will need to create a login). Learners can work through these courses at their own pace.
Patient Engagement Resource Hub (Canadian Foundation for Healthcare Improvement)
Resources include Canadian and international open source tools. Use them in patient and family engagement initiatives to improve health and healthcare.
Point of Care Foundation: EBCD: Experience-based co-design toolkit [UK] This toolkit gives a step-by-step guide to improving patient experience of health care using a technique called experience-based co-design (EBCD).The toolkit includes short videos from staff and patients involved in experience-based co-design (EBCD) projects to help bring to life the successes and intense rewards of running this type of improvement project.
The Beryl Institute is the global community of practice and premier thought leader on improving the patient experience in healthcare. *Full text access to resources is limited to Beryl Institute members.
Additional Resources and Further Reading
Consumers’ and health providers’ views and perceptions of partnering to improve health services design, delivery and evaluation: a co‐produced qualitative evidence synthesis. Cochrane Database of Systematic Reviews (2023)
Key messages
• Power imbalances between health providers and consumers can limit consumer participation in health service planning, delivery and evaluation.
• Power imbalances in the partnership may happen because of the ways consumers are recruited, how meetings are run, and how decisions are made.
• To have successful partnerships with consumers, health providers need to address these power imbalances.
• Some consumers and health providers believed that partnerships improved the culture and environment of the health service, as well as how health services were planned and developed.
Consumers’ and health providers’ views and perceptions of partnering to improve health services design, delivery and evaluation: a co‐produced qualitative evidence synthesis / Merner B, Schonfeld L, Virgona A, Lowe D, Walsh L, Wardrope C, et al. Cochrane Database of Systematic Reviews. 2023 (3).
This qualitative evidence synthesis examined the partnering with consumers, particularly on ‘formal group partnerships where health providers and consumers share decision‐making about planning, delivering and/or evaluating health services’. The work sought to:
1. ‘To synthesise the views and experiences of consumers and health providers of formal partnership approaches that aimed to improve planning, delivery or evaluation of health services.
2. To identify best practice principles for formal partnership approaches in health services by understanding consumers' and health providers' views and experiences.’
Focussing on 33 studies, the analysis identified 19 findings that were then grouped into 5 categories:
• Contextual factors influencing partnerships
• Consumer recruitment
• Partnership dynamics and processes
• Perceived impacts on partnership participants
• Perceived impacts on health service planning, delivery and evaluation.
The authors emphasise the importance of power imbalances and the need to be aware of these and to address them. The key messages in the plain language summary stress these in noting:
• ‘Power imbalances between health providers and consumers can limit consumer participation in health service planning, delivery and evaluation.
• Power imbalances in the partnership may happen because of the ways consumers are recruited, how meetings are run, and how decisions are made.
• To have successful partnerships with consumers, health providers need to address these power imbalances.
• Some consumers and health providers believed that partnerships improved the culture and environment of the health service, as well as how health services were planned and developed.’
Consensus on how to optimise patient/family engagement in hospital planning and improvement: a Delphi survey. (BMJ open, 2022)
Patient and family engagement (PE) in health service planning and improvement is widely advocated, yet little prior research offered guidance on how to optimise PE, particularly in hospitals. This study aimed to engage stakeholders in generating evidence-informed consensus on recommendations to optimise PE.
Understanding integration: how to listen to and learn from people and communities | TheKingsFund (2021)
The move towards integrated care has been the defining policy in health and care over the past decade and will continue to gather pace with the development of integrated care systems (ICSs). The aim of integrated care is to improve people’s outcomes and experiences of care by bringing services together around people and communities.
This means addressing the fragmentation of services and lack of co-ordination that people often experience by providing person-centred, joined-up care. One key question for ICSs and the partners working in them is how they will know whether they are meeting the needs of the people they serve. Those best placed to understand what they need, what is working and what could be improved are the people and communities using services. Their lived experience is a powerful tool to improve existing services and identify new and better ways to meet people’s needs. Currently, people’s experiences of health and care services are usually collected and understood at the level of individual providers (Wellings 2019). This means we know about people’s experiences of individual services, such as general practice, hospitals or social care, but not about whether these services are working well together to meet people’s needs.
Over the past year, Picker and The King’s Fund have been working with NHS England and NHS Improvement on how ICSs can listen to and learn from people and communities. We have produced a practical guide for partners working in these systems, with ideas on how they might go about this. There is no one-size-fits-all solution. It will require a range of different methods and approaches to understand, monitor and measure how well people’s needs are being met. Perhaps most importantly, it will require partners to listen and learn together. As important as the methods adopted, will be the importance placed on this area of work and we have put together a set of principles for systems to adopt to ensure that the voices of people and communities are at the heart of partnership working.
The guide, created by The King’s Fund and Picker on behalf of NHS England and NHS Improvement, has been developed with input from ICSs, patient leaders, and engagement and experience experts. We hope it will prove useful to systems and will encourage and help them as they work to co-ordinate services around what matters to people and communities.
NHS information and resources Experience Based Design: Questionnaire.Experience Based Design: Guide & Tools. Experienced Based Design: Concepts and Case Studies. Creating a revolution in patient and customer experience - Implementation Guidance The Friends and Family Test. Feeling better? Improving patient experience in hospital.NICE Quality standard for patient experience in adult NHS services
Australian Commission on Safety and Quality in Health Care NSQHS Standard 2: Partnering with consumers: Tip Sheets and self assessment tool
The KingsFund Patients as partners: Building collaborative relationships among professionals, patients, carers and communities
More collaborative relationships among health and care professionals, patients, service users, carers and communities are essential for the future of the NHS, but what helps to build effective relationships? This guide stems from an evolving body of the Fund's work focused on exploring and supporting shared leadership. This work is reinforced by a growing consensus that health services, agencies, patients and communities need to work together more – and differently.
Guide to patient and family engagement in hospital quality and safety (AHRQ) An evidence-based resource to help hospitals work as partners with patients and families to improve quality and safety.
Co-design: shared perspectives on authentic co-design: putting consumers and carers at the center of mental health reform (Co-design Initiative, 2016)
Reexamining “Defining Patient Experience”: The human experience in healthcare (Patient Experience Journal; 2021)
Journals
Patient Experience Journal
Patient Experience Journal (PXJ) is an international, multidisciplinary, and multi-method, open-access, peer-reviewed journal engaging research, proven practices and a range of perspectives, inclusive of patients and families, focused on understanding and improving patient experience. PXJ is designed to share ideas and reinforce key concepts that impact the delivery of service, safety and quality and their influence on the experience of patients, residents and families across healthcare settings.
Journal of Participatory Medicine
The Journal of Participatory Medicine is a peer-reviewed, open access journal with the mission to advance the understanding and practice of participatory medicine among health care professionals and patients. It is published by the Society for Participatory Medicine.
Health Literacy
Guidelines and Resources
Improving Health Literacy: New Zealand Medical Association Policy Briefing (2017) [NZMA]
The New Zealand Medical Association has published a policy briefing on Improving Health Literacy, that seeks to promote a shared understanding of what health literacy means, why it is important, and what can be done to improve it.
Health literacy review: a guide (2015) [NZ MoH]
Developped to take organisations through the review process and show you how to develop a Health Literacy Action Plan
see also 'A framework for health literacy: a health system response'
Rauemi Atawhai – A guide to developing health education resources in New Zealand (2012) [NZ MoH]
“A guide to developing health education resources in New Zealand has been developed to help the Ministry of Health and its contractors produce effective and appropriate health education resources that meet the needs of the intended audience, are easy to understand, and support improved health literacy.”
Translation is not enough: cultural adaptation of health communication materials ([ECDC: 2016]
This report describes the tools we need to effectively use print resources to communicate across cultures. This guide introduces an innovative five-step, stakeholder- based approach to adapting health communication materials. It describes how countries can take any health communication material, produced in English or other languages) and create adapted products which reflect national or local realities, needs and assets without losing the scientific correctness, core concepts and messages of the original version.
More resources for developing information that is easy to understand and use:
NSW Clinical Excellence Commission – Health Literacy Guide
Agency for Healthcare Research and Quality – Health literacy universal precautions toolkit
Agency for Healthcare Research and Quality – Patient Education Materials Assessment Tool
US Centers for Disease Control and Prevention – Simply put: A guide for creating easy-to-understand materials
Three steps to better health literacy: a guide for health professionals (2014)
Engaging with consumers: a guide for district health boards (HQSC: 2015)
This resource is a practical guide to help New Zealand district health boards, and the health and disability services they fund, to engage better with consumers. It covers consumer engagement in the design and delivery of services, as well as the development of policy and governance procedures.
Health service co-design toolkit [Waitemata DHB]
Toolkit for Staff working in Culturally & Linguistically Diverse Health Environments [Waitemata DHB]
Self management support toolkit [NZ Healthify]
Making it easier: a health literacy action plan for Scotland (2017) [NHS Scotland]
HEALTH LITERACY: Taking action to improve safety and quality (ACSQHC)
The aims of the paper are to raise awareness of the importance of health literacy, and to start discussions about how it can be addressed systematically and who can be involved in this process. The paper provides a broad overview of health literacy in Australia and identifies a number of areas and actions required to address health literacy in a coordinated way.
Health literacy: a summary for clinicians (ACSQHC, 2017)
The Universal Patient Language
The Universal Patient Language (UPL) is a set of resources that helps you communicate with patients about complex topics. We are constantly evolving the UPL as we learn new things. The UPL was designed to help you:
Translate complex scientific data into digestible information;
Make your communications relatable and meaningful to patients;
Effectively use icons, visuals, and colors;
Enable patient learning through digital media
Additional Resources and Further Reading
Health promotion competencies for Aotearoa New Zealand (2012)
Maaori Health Literacy Research: Gestational diabetes mellitus (2014)
He Māramatanga Huangō: asthma health literacy for Maaori children in New Zealand (2015)
Case Study 4: The Samoan Self-management Education Programme for People with Long-term Health Conditions (Word, 51 KB)
Refugee healthcare: a handbook for health professionals (2012)
Car J, Lang B, Colledge A, Ung C, Majeed A. Interventions for enhancing consumers' online health literacy. Cochrane Database Syst Rev 2011(6):CD007092.
Nicola Diviani et al. Low Health Literacy and Evaluation of Online Health Information: A Systematic Review of the Literature. J Med Internet Res 2015;17(5):e112)
Health literacy interventions and outcomes: an updated systematic review (2011)
last updated 29 October 2025
