Partners in Care

These readings and links accompany the Health Quality & Safety Commission's document Engaging with consumers: a guide for district health boards (DHB), and are arranged by theme. The guide is available here.

• NZ practice – full length interviews
• NZ examples of terms of reference, policies, position descriptions
• International resources about person-centred care and patient and family engagement
• International guidelines and frameworks for consumer engagement
• International self-assessment tools
• NZ examples of web-based patient information and patient portals
• Patient-reported experience measures and outcome measures
• Articles and research about consumer engagement and person-centred care
• Co-design
• New Zealand guides, frameworks and competencies
• Health literacy resources
• Māori resources
• New Zealand resources for disability

NZ practice – full length interviews 

• Graeme Norton, Chair, Hawkes Bay Health consumer council 
• Jay O’Brien, patient experience manager, Waitemata DHB
• Joanne Henare, family and whānau advisor mental health and addiction services, Midcentral DHB
• Wendy Entwistle, consumer engagement facilitator, Waikato DHB
• Traci Stanbury, consumer representative, South Island Alliance
• Renee Greaves patient and whānau care advisor, Counties Manukau DHB
• Northland DHB consumer council story – Lianne Penney, portfolio manager, Northland Health Services Plan

NZ examples of terms of reference, policies, position descriptions

• Bay of Plenty DHB integrated health care strategy 2020
• Canterbury DHB family advisory council (FAC) member advertisement
• Canterbury DHB FAC application form
• Canterbury DHB FAC position description
• Canterbury DHB FAC terms of reference
• Canterbury DHB FAC flow chart showing communication with DHB
• Canterbury DHB FAC flow chart showing organisational structure
• Canterbury DHB youth advisory council terms of reference
• Capital & Coast DHB consumer involvement policy
• Consumer network terms of reference (Health Quality & Safety Commission)
• Hawke's Bay Health Consumer council terms of reference
• Hawke's Bay Health Consumer council annual plan 2014–15
• MidCentral DHB master health services plan consumer advisory panel factsheet
• MidCentral DHB master health services plan consumer advisory panel terms of reference
• MidCentral DHB master health services plan consumer advisory panel expressions of interest
• Northland Health Consumer Council terms of reference
• Northland Health consumer council expressions of interest letter to organisations
• Northland Health consumer council member position description
• Northland Health consumer council member nomination form
• Northland Health consumer council selection criteria
• Policy for paying consumers (Health Quality & Safety Commission)
• Taranaki DHB patient- and family-centred care interim council terms of reference
• Waikato DHB consumer engagement facilitator job description

International resources about person-centred care and patient and family engagement

• Australian Commission on Safety and Quality in Healthcare – patient centred care; improving quality and safety through partnerships with consumers (Australian Commission on Safety and Quality in Healthcare) 
• Academy of royal medical colleges: Protecting resources, promoting value. A UK doctors guide
• Communication about serious illness care goals – A review and synthesis of best practice JAMA Intern Med:174(12): 1994-2003
• International Association for public participation IAP2 spectrum of public participation
• Kingsfund UK; patient-centred care quality improvement innovation and research website
• National voices UK: Prioritising person centred care: the evidence
• People in control of their own health care; the state of involvement 4 November 2014
• Person centred care: Co-creating a healthcare sector for the future. March 2014
• Person- and family-centred care website (Institute for Healthcare Improvement)
• World Innovation Summit for Health 2013: Patient and family engagement: partnering with patients, families, and communities for health: A global imperative.

International guidelines and frameworks for consumer engagement

• A roadmap for patient and family engagement in healthcare practice and research. Carman KL, Dardess P, Maurer ME, Workman T, Ganachari D, Pathak-Sen E., September 2014 (American Institutes for Research)
• AHRC (USA agency for healthcare research and quality) engaging families training guide
• Become a patient and family advisor – for consumers
• Best practices for hospital leaders – for providers
• British Medical Association Patient and public involvement: A Toolkit for GPs
• Carman et al (2013) Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs 32:2 (2013)pp 223-231
• Checklist: Am I ready to become an Advisor? – for consumers
• Checklist: Readiness to partner with patient and family advisors – for staff
• Guide to the Australian standards for boards (Australian Commission on Safety and Quality in Health Care)
• Health Research and Educational Trust (2015, March). Partnering to improve quality and safety: a framework for working with patient and family advisors
• How patient and family engagement benefits your hospital – for providers
• Person centred care made simple; what everyone should know about person-centred care. The health foundation: inspiring improvement
• South Australia Health: Guide for engaging with consumers and the community 2013
• South Australia Health: A Framework for active partnership with consumers and the community 2013
• Standard two: quality and safety markers for consumer engagement (Australian Commission on Quality and Safety in Health Care) – see also useful tip sheets
• Sullivan institute for Healthcare and Innovation: patient experience council: the principles of patient centred care
• Ways to learn more – information to help get hospitals started – for providers

International self-assessment tools

• Australian Health Safety and quality commission Standard two: quality and safety markers for consumer engagement (tip sheets 1-4)
• IHI Patient and family centred care organisational self-assessment tool

NZ examples of web-based patient information and patient portals

• Consumer voices in health (HealthLink North) website
• Guidelines for public servants on public participation (Community Matters website)
• Hawke's Bay Health consumer council webpage
• Hawke's Bay Health consumer feedback webpage
• Health Navigator (patient information) website
• Patient portals in primary care

Patient-reported experience measures and outcome measures

• Cox, B; (2015) Guest Editorial: NHS at the hustings. Four quality indicators for person centred care. European journal for person centred healthcare vol 3, 1
• Dr Alf Collins (April 2014). Measuring what really matters: Towards a coherent measurement system to support person-centred care. The Health Foundation
• Institute of Healthcare Improvement, Savitz, L; Luther, K; (2015) patient-reported measures: collecting this data is critical to the value equation (2015) healthcare executive 2015 Jan: 30 (1): pp74-77
• Lachman, P; Linkson, L; Evans, T; et al (30 March 2015) developing person-centred analysis of harm in a paediatric hospital: a quality improvement tool. BMJ quality and safety online April 2015
• Patient reported outcomes – quality forum

Articles and research about consumer engagement and person-centred care

• Angela Coulter (2012): Leadership for patient engagement. Kings Fund UK
• Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care. IHI Innovation Series white paper. Cambridge, Massachusetts: Institute for Healthcare Improvement; 2011
• Bismark, M; Biggar, S; Crock,C; Morris, J; Studdert, D (2014) The role of governing boards in improving patient experience: attitudes and activities of health service boards in Victoria, Australia. Patient Experience Journal Vol 1, pp 144–152
• Bodenhiemer, T; Sinsky, C; (2014) From triple to quadruple aim: Care of the patient requires care of the provider. Annals of Family Medicine 12(6)
• Flipping Healthcare: an essay by Maureen Bisognano and Dan Summers. British Medical Journal 2014: 349
• Hibbard, J; Greene, J (2013) What the evidence shows about patient activation Health Aff Feb 2013: 32, 2, 207-214
• My Kidneys, my choice, decision aid: supporting shared decision making. Journal of Renal Care 41(2), 81-87
• Richards, T; Montori,V; Godlee, F; Lapsley, P; Paul, D; (2013) Let the patient revolution begin. Patients can improve healthcare: it’s time to take partnership seriously. BMJ 2013; 346:f2614

Co-design

• Experience based co-design toolkit, Kingsfund UK
• Health and disability providers partnering with consumers toolkit
• Health co-design NZ website
• Hilary Boyd presentation, Commission partners in care “Show and Tell” symposium presentation
• National nursing research unit, Kings College London. Improving patient-centred care through experience-based co-design (EBCD): an evaluation of the sustainability and spread of Experience Based Co-design in a cancer centre. December 2014
• Partners in care “show and tell” symposium presentation (Nick White & Ruth Wickers)
• Taranaki DHB: patient and family/whānau centred care framework 2014-2017

New Zealand guides, frameworks and competencies

• Capital & Coast DHB, 3DHB disability responsiveness plan
• Competencies for the mental health and addiction service user, consumer and peer workforce (National Service User and Peer support Competency Workforce Development group)
• Consumer representative training guide (Health Quality & Safety Commission)
• Guide for developing a consumer experience framework: A guide to developing a framework for collecting information from consumers to improve the quality of health and disability services (National Quality and Risk Managers Group June 2012)
• Health and Disability Commissioner code of consumer rights
• Model for supporting people with disabilities (Ministry of Health)
• Partners in Care framework (Health Quality & Safety Commission) 
• Service user, consumer and peer workforce: A guide for managers (national service user and peer support competency workforce development group)
• Service user, consumer and peer workforce: A guide for planners and funders (national service user and peer support competency workforce development group)
• Taranaki DHB: Patient- and family-centred care framework 2014–17
• Toolkit: Consumer experience (national quality and risk managers group, June 2012)
• Toolkit: Health and disability providers partnering with consumers toolkit (Health Quality & Safety Commission)

Health literacy resources

• Attributes of a health literate organisation (Institute of Medicine)
• Communicating so people will understand poster (Open for better care campaign)
• Communication about serious illness care goals: A review and synthesis of best practice
• Communication strategies for clinicians (IHI)
• Enliven organisational health literacy: self assessment resource (2013)
• Health literacy 'teach-back' training method for clinicians
• Health Literacy: A prescription to end confusion (Institute of Medicine)
• Let’s PLAN for better care resource (Open campaign)
• Ministry of Health framework and guide to health literacy (2015)
• The Ophelia project, Victoria Australia, a project to improve health literacy in the community
• Three steps to health literacy (Health Quality & Safety Commission)
• When doctors don’t listen: How to avoid misdiagnoses and unnecessary tests Dr Leana Wen and Dr Josh Kosowsky 2012, Thomas Dunne Books, St Martins Press
• Workbase: health literacy website (New Zealand)

Maori resources

• Cultural competency online training
• Iwi boundaries map
• Kaupapa māori health research
• Māori health (Ministry of Health)
• Māori public health
• Māori responsiveness videos (Health Quality & Safety Commission) 
• Mauriora Associates, cultural foundation training
• Te Puni Kōkiri
• Whāia Te Ao Mārama: The Māori disability action plan for disability support services 2012–17 (Ministry of Health)
• Whānau Ora resources, stories and research

New Zealand resources for disability

• Competencies for the mental health and addiction service user, consumer and peer workforce (National Service User and Peer support Competency Workforce Development group)
• Code of Health and Disability Services Consumers' Rights (Health and Disability Commissioner)
• Ministry of Health model for supporting people with disabilities
• 3DHB disability responsiveness plan (Capital & Coast DHB)
• Service user, consumer and peer workforce: A guide for planners and funders (National Service User and Peer support Competency Workforce Development group)
• Service user, consumer and peer workforce: A guide for managers (National Service User and Peer support Competency Workforce Development group)

Last updated 20/01/2020