The Real People Real Data Toolkit

This tool-kit provides straightforward advice for health services, policy makers and consumer organisations that want to gather, understand and use consumer stories to guide their strategic decision-making. It aims to assist organisations to use this often-overlooked evidence base to ensure our health system delivers consumer-centred care.

Use the links on the right to find out more.

Real People, Real Data

Every person has a story to tell about their health, and their experience of the healthcare system. These first-hand experiences can help policy-makers, consumer organisations and health services to understand what’s working and what’s not working in our health system; and to partner with health consumers to identify and make the changes that are needed.

If we want better health outcomes and healthier communities, we must listen to consumer experience, and act on it. Consumer stories can be a strong evidence base to shape better decision-making about health policies, services and spending. For this consumer evidence to reach its potential, we need robust methods for gathering, analysing and using consumer experience to drive better health outcomes.

This tool-kit provides straightforward advice for health services, policy makers and consumer organisations that want to gather, understand and use consumer stories to guide their strategic decision-making. It aims to assist organisations to use this often-overlooked evidence base to ensure our health system delivers consumer-centred care.

A printable version of the toolkit is available at http://ourhealth.org.au/sites/default/files/docs/rprdtoolkit.pdf

For further information, the external evaluation of the Real People, Real Data pilot is also available below.

Resources: 

What is Consumer-Centred Care?

There are many definitions of patient or consumer-centred care, but at heart these all describe “an approach to the planning, delivery and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients and families”.[1]

Drawing on the work of the Picker Foundation it is generally accepted that the most important aspects of patient or consumer-centre care include: 

  • Respect for patients’ preferences and values;
  • Emotional support;
  • Physical comfort;
  • Information, communication and education;
  • Continuity and transition;
  • Coordination of care;
  • The involvement of family and friends; and
  • Access to care.[2]

For the International Association of Patients’ Organisations (IAPO), the essence of consumer or patient-centred healthcare is that the healthcare system should be designed and delivered to address the healthcare needs and preference of patients, so that healthcare delivers better health and wellbeing, and is cost-effective and appropriate. 

 

IAPO identifies five principles that underpin patient-centred healthcare: 

  1. Respect: Patients and carers have a fundamental right to patient-centred healthcare that meets their unique needs, preferences and values, as well as their autonomy and independence.    
  2. Choice and empowerment: Patients have a right and responsibility to participate, to their level of ability and preference, as a partners in making healthcare decisions that affect their lives. This requires a responsive health service which provides suitable choices in treatment and management options that fit in with patients’ needs, and encouragement and support for patients and carers that direct and manage care to achieve the best possible quality of life. Patients’ organisations must be empowered to play meaningful leadership roles in supporting patients and their families to exercise their right to make informed healthcare choices.    
  3. Patient involvement in health policy: Patients and patients’ organisations deserve to share the responsibility of healthcare policy-making through meaningful and supported engagement in all levels and at all points of decision-making, to ensure that they are designed with the patient at the centre. This should not be restricted to healthcare policy but include, for example, social policy that will ultimately impact on patients’ lives.    
  4. Access and support: Patients must have access to the healthcare services warranted by their condition. This includes access to safe, quality and appropriate services, treatments preventative care and health promotion activities. Provision should be made to ensure that all patients can access necessary services, regardless of their condition or socio-economic status. For patients to achieve the best possible quality of life, healthcare must support patients’ emotional requirements, and consider non-health factors such as education, employment and family issues which impact on their approach to healthcare choices and management.    
  5. Information: Accurate, relevant and comprehensive information is essential to enable patients and carers to make informed decisions about healthcare treatment and living with their condition. Information must be presented in an appropriate format according to health literacy principles considering the individual’s condition, language, age, understanding, abilities and culture.[3]   

References:

[1] Institute for Patient and Family Centred Care (2010) in Australian Commission on Safety and Quality in Health Care (2011) Patient-centred care: Improving quality and safety through partnerships with patients and consumers, ACSQHC, Sydney, p7.   

[2] Australian Commission on Safety and Quality in Health Care (2011) Patient-centred care: Improving quality and safety through partnerships with patients and consumers, ACSQHC, Sydney, p7.

[3] International Alliance of Patients’ Organizations (2006) Declaration on Patient-Centred Healthcare (IAPO: London) 

How can stories help deliver consumer-centred care?

Learning from and acting on health consumer experience is a powerful way to work toward patient-centred care. 

Stories are different to more commonly gathered kinds of evidence about health service and system performance. Unlike statistical measures of clinical safety and effectiveness, and surveys of patient experience, people’s stories about health and care provide information about whole of life and whole of system experiences of health, healthcare and health outcomes. 

Personal accounts of lived experience draw attention to what matters most to people, for example about:

  • The healthcare they receive (or cannot access); and
  • Their experiences of continuity (or discontinuity) in care.

Stories can also provide information about the link between the health services people receive and their health outcomes. Personal experiences can provide evidence about the powerful role that policies, services and experiences outside the health system can play in shaping health outcomes. Telling a story can allow people to provide their perspectives on what changes would improve their own, and others’, health experiences and outcomes. 

There is strong evidence that consumer narratives provide valuable information for improving health. Yet it remains relatively uncommon for health services and health policy agencies to gather and use this information in a systematic way. 

Consumer stories are sometimes dismissed as “mere” anecdote. In reality our stories contain valuable evidence about the performance of health policies, services and systems. The robust but practical approach in this toolkit will help you to elevate stories from “anecdote” to practical evidence that you can use to guide better decision-making and work toward better health outcomes. 

Why stories and storytelling? An overview of the evidence.

Stories provide rich information about people’s experiences of their health, health services and the health system. This is essential information for better decision making, for quality improvement and to guide health reform.

Stories are a cornerstone of good data 

Most data gathered by and about health services are quantitative: numbers and statistics. But it’s increasingly recognised that qualitative data are equally important. Stories provide information distinct from that which can be gathered by commonly used methods such as experience or satisfaction surveys.[4] It’s not that one kind of data is better than the other. Rather, stories complement quantitative data. Together stories and statistics provide a more complete picture of a situation. Qualitative information (like stories) can explain the “why” behind the numbers. For example, statistics show that some Australians – such as Indigenous people and those in low paid work - are at greater risk of poor health.[5] People’s stories can help to explain why these inequalities persist, and what can be done to overcome them.[6]

References:

[4] Luxford, Karen (2012) ‘What does the Patient Know about Quality?’, International Journal of Quality Health Care 24 (5): 439-440  

[5]Gubhaju L, McNamara B, Banks E, Joshy G, Raphael B, Williamson A, Eades S. (2013) ‘The overall health and risk factor profile of Australian Aboriginal and Torres Strait Islander participants from the 45 and up study’, BMC Public Health 13:661; Broom DH, D’Souza RM, Strazdins L, Butterworth P, Parslow R, Rodgers B (2006) ‘The lesser evil: bad jobs or unemployment? A survey of mid-aged Australians’, Social Science and Medicine 63, 575-586.

[6]Victorian Department of Human Services (2005) Doing it with us not for us, Participation in your health service system 2006-2009: Victorian consumers, carers and the community working together with their health services and the Department of Human Services (Rural and Regional Health and Aged Care Services Division, Victorian Government Department of Human services, Melbourne); National Health Priority Action Council (2005) Framework for assessing the impact of new health initiatives and polices on consumers (Australian Government Department of Health and Ageing: Canberra)

Consumer priorities and perspectives

People’s stories about health and healthcare capture what matters from their perspectives. 

Health professionals are skilled and highly knowledgeable in their areas of practice and specialisation. 

But health consumers are the only people who deal with all of the health services and experts that respond to their situations. As a result consumers’ stories of experience can provide crucial information about things like quality, safety, coordination and continuity of care; and about the longer-term outcomes of treatments and procedures.[7]

People’s stories also provide information about the personal, community and social factors that shape health outcomes. Stories can highlight the role of policies, services and experiences that are outside the health system but powerfully affect health outcomes.[8]

Stories also allow people to identify what they felt worked, and what didn’t work, in their health and care. Importantly, stories also let people share what they think could improve their health and health care they receive.[9]

Stories “contain almost everything that is required for a deep appreciative understanding of the strengths and weaknesses” of a service, system or situation.[10]

This is an essential evidence base for any decision that affects consumer health. 

References:

[7]Conway et al (2006) Partnering with patients and families to design a patient- and family-centered health care system: a roadmap for the future. A work in progress (IFFCC and IHI) 

[8] Dwamena F, M Holmes-Rovner, C M Gaulden S Jorgenson S, G Sadigh, A Sikorskii, S Lewin S, RC Smith, J Coffey, A Olomu (2012) Training healthcare providers to be more 'patient-centred' in clinical consultations (Cochrane Collaboration, Cochrane Consumers and Communications Review Group: La Trobe University, Melbourne); Murphy, Margaret (2012) ‘The patient experience as a catalyst for change’, Conference Proceedings, Patients for Patient Safety, Safety Forum IPP, Belfast October 3 2012 (World Health Organisation Patient Safety Alliance: WHO)

[9] Charmel P and S Frampton (2008) ‘Building the business case for patient-centred care’, Healthcare Financial Management 62 (3):80-85 

[10] Bate, Paul and Glenn Robert (2006) Experience-based design: from redesigning the system around the patient to co-designing services with the patient (Quality and Safety in Health Care 15(307-310), p309

Consumer partnership, engagement and empowerment

Stories support consumer partnership and engagement

Listening to, and acting on, consumer stories are ways to engage and partner with consumers. Consumer engagement and partnership are not just requirements of the National Safety and Quality Health Standards (and state and territory legislative and policy frameworks), they are proven means of delivering better health outcomes. The outcomes that flow from consumer partnership include: improved clinical quality and outcomes, more cost effective service delivery, and better consumer experiences of care. Specific benefits include: 

Decreased mortality, decreased readmission rates, decreased rates of healthcare acquired infections, reduced length of stay, improved adherence to treatment regimes [and]… improved functional status… lower costs… and increased workforce satisfaction and retention rates.[11]

Listening to and acting on consumer stories can deliver all the essential benefits of consumer engagement: 

  • It is one way to learn from and work with people to deliver better health outcomes. 
  • Listening to stories regards consumers as people with knowledge and experience to share about their health and healthcare. 
  • It provides information about consumer circumstances, choices, and preferences that can help to tailor service delivery to actual needs and situations. 
  • Sharing stories can allow consumers to contribute to, and to shape, the design, planning, delivery and evaluation of care.[12]

Stories can build empathy and drive change 

Stories can demonstrate the personal and emotional impacts of health policies and services, on people. They show the ‘human side’ of policy debates and service challenges.  A well-told story can help listeners or readers ‘walk in the shoes’ of a patient or carer. This builds empathy for the consumer experience. It can encourage willingness to make changes to improve consumer experience. Stories can “build understanding, create a platform for discussion and motivate people” to act for an improved health system and better health outcomes.[13]

Telling a story can be empowering, but can also present risks.

Inviting consumers to share their stories can be an important way of acknowledging that they have knowledge that is important to health services, and that can benefit other consumers. People often find it satisfying to share a story that contributes to a better experience for others.[14] Sharing a health experience can contribute to a sense of control over difficult or challenging experiences of ill-health.[15] In turn this has been found to increase the likelihood of effective self-management of health[16] and some chronic conditions.[17]

When care is taken to ensure stories are heard from marginalised or excluded people, storytelling projects can also help to ensure that “a diversity of voices is heard in public debate”.[18]

This can assist in ensuring that health debates reflect the issues for health consumers, and in particular those whose voices are less often heard by decision-makers. 

However, it is important to recognise that sharing a story can pose risks to consumers. It can be distressing, or traumatic, to share a story about difficult health experience. Sharing certain stories can expose storytellers to stigma or discrimination. Consumers may fear reprisals or reduced quality of care if they share a negative story about a health professional or service. It is important to recognise and manage these risks to consumers. This respects consumers, and acknowledges the value of their stories as a powerful source of evidence for better decision-making. This toolkit provides guidance and support in this area.

References:

[11] Australian Commission on Safety and Quality in Health Care (ACSQHC) (2011) National Safety and Quality Health Service Standards (ACSQHC: Sydney

[12] Consumers Health Forum of Australia (2013) Consumer and Community Engagement <http://ourhealth.org.au/consumer-rep-support/consu...

[13] Ball, Rachel (2013) When I tell my story, I’m in charge: Ethical and effective storytelling in in advocacy (Victoria Law Foundation: Melbourne).

[14] Palmer, David, Lucy Williams, Sue White, Charity Chenga, Verusca Calabria, Dawn Branch, Sue Arundal, Linda Storer, Chris Ash, Claire Cuthill, Haile Bezuayehu, Eleni Hatzidimitriadou (1999) ‘ “No one knows like we do”, the narratives of mental health service users trained as researchers’ Journal of Public Mental Health 8(4):1999; The Kings Fund (2012) Experience Based Co-Design Toolkit <http://www.kingsfund.org.uk/projects/ebcd>

[15] Centre for Ageing Studies, Flinders University (2006) The Australian longitudinal study of ageing: 15 years of ageing in South Australia (Flinders University and South Australian Department of Families and Communities: Adelaide)

[16] Centre for Ageing Studies, Flinders University (2006) The Australian longitudinal study of ageing: 15 years of ageing in South Australia (Flinders University and South Australian Department of Families and Communities: Adelaide), p87-88

[17] Weingarten, S, J Henning, E Badamgarav, E Knight, K Hasselbald, V Gano and J Ofman (2002) ‘Interventions used in disease management programmes for patients with chronic illness – which ones work? Meta-analysis of published reports’, British Medical Journal, 325, 925

[18] Ball, Rachel (2013) When I tell my story, I’m in charge: Ethical and effective storytelling in in advocacy (Victoria Law Foundation: Melbourne), p50

Deciding to use this tool-kit

What’s in this tool-kit?

This Toolkit provides step-by-step guidance to help you gather, consider and act on consumer stories. It does this by:

  • Helping you to plan for success by considering some key questions before you begin; 
  • Providing a flexible framework for thinking and asking about health experiences from the consumer’s perspective – the patient life journey;
  • Giving you practical advice about undertaking respectful semi-structured interviews, a proven way of gathering stories that provide information you can act on; and
  • Suggesting a consumer-engaged way of analysing and presenting stories so that their most important messages can be powerfully communicated to decision-makers. 

The tool-kit also provides advice to assist you to invite participation respectfully, ensure that consumer ownership and control over their story is maintained, and to identify, minimise and manage any risks to consumers who choose share their story with you. 

It suggests ways to ensure consumer ownership and control of their stories is maintained, and that 

Templates and checklists that you can use or modify are provided throughout.

How can I use this tool-kit?

The tool-kit is intended as a flexible resource that organisations can draw on. Each of the steps in the kit build on those introduced previously, but it is certainly not necessary to complete every step in order to gather valuable consumer stories to inform your work and decision-making. For example:

  • The Planning section introduces a framework for respectful and effective consumer engagement that can stand alone as a resource to support you in this area. 
  • The Patient Life Journey framework is an adaptable consumer-centred framework that is relevant to many areas of health policy and service delivery (not only as a guide to gathering consumer stories). 
  • This tool-kit provides you with a guide to one-to-one semi-structured interviewing. However much of the advice in this area is also applicable to other settings (such as group consultations or informal ‘everyday’ opportunities to learn more about consumer experiences).
  • A semi-structured interview is a valuable way of understanding of a consumer’s experience, regardless of whether you choose to record this information in a transcript, or to analyse this data using the approach outlined in the Analysis section of this toolkit. 
  • The Health Experience Wheel tool that this kit introduces you to can be adapted to communicate information gathered in a variety of ways - it isn’t limited to semi-structured interview data. 

This tool-kit supports you to gather and analyse consumer experience narratives, and apply this information to decision-making. The techniques described in the kit can be applied for quality monitoring and improvement purposes, in consumer consultation and consumer-involved research, and to inform the design and evaluation of policies and services. Inviting and sharing consumer experience in the ways suggested in the tool-kit can deepen your appreciation of the impact of policies and services on consumers; and can provide you with essential consumer evidence to ensure your decisions improve health outcomes. 

The Toolkit is well-suited to use alongside other information and evidence gathering methods. It helps you to provides the qualitative consumer evidence that is often missing from decision-making. It can highlight areas that require further investigation using quantitative or other qualitative methods. However it can also be used to support stand-alone projects.

The Toolkit works best when:

  • The tools it presents are used to support a specific decision-making task;
  • There is a genuine interest in your organisation in listening to and learning from consumer experience; 
  • You have a clear objective and a clear plan to use the consumer evidence that you gather using the techniques outlined in the Toolkit. 

Planning for success: Questions to consider before you begin

What role does storytelling have in your consumer and community engagement strategy?

Before you start work involving stories, consider the role that consumer stories and storytelling play in your wider consumer and community engagement strategy.

Gathering consumer stories is just one form of consumer engagement.  

The work of an organisation or a single decision-making task may require multiple types and levels of engagement.

Consumers may be involved in a steering group, consultations, focus groups, community forums or numerous other forms of engagement to support your work. Guidance and resources to assist you in planning effective consumer engagement has been provided by the Consumers Health Forum of Australia in an information module available online.

The role for stories needs to be considered as part of your overall planning.  What you learn from consumer stories may guide immediate action or they may highlight areas that need to be investigated further using other qualitative or quantitative methods.

What is the objective of your storytelling work?

Like all consumer engagement, it is important to be clear about the aim of your storytelling work. Think through what you hope to achieve, and following from this, who you need to involve and how you might go about supporting that involvement.

In the next section in this tool-kit, the Consumers Health Forum suggests Fives Steps to Planning Successful Storytelling that can be used when planning to use stories to inform a decision-making task. This includes assistance in clarifying the aim (or aims) of your storytelling work.  

What investment is required?

Inviting and analysing consumer stories require an investment of time and resources. Before you begin, identify what resources you can commit and make sure those resources are sufficient to meet your objective. If they are not, you may need to re-think the scope of your storytelling work.

A time investment

It takes time to plan, undertake and evaluate a storytelling project. How much time is required will depend on the aim and scope of your project. It will take much less time to use this tool-kit to gather a small number of in-depth case-studies, or to use the Toolkit to conduct key informant style semi-structured interviews to gather a small number of consumer stories. If you plan to use the Toolkit to gather a large number of in-depth stories through interviews, the time investment will of course be greater. Consider that listening to a single consumer’s story and transcribing that story, is likely to take up to one full day’s work. (It can take one to two hours to listen to a consumers’ story, and it takes on average 2.5 to 3.5 hours to transcribe one hour of recorded audio.) 

A further investment of time is required in the planning stage, arranging interviews, liaising with consumers who share their story, and in any analysis of the narratives you gather. You will need to identify which staff in your organisation will give their time to this work. This could involve several roles and responsibilities. These are described below at Roles and Responsibilities. 

Resource investment

Consider whether there are any resources you will need to purchase. This could include: 

  • An audio-recording device for recording face-to-face interviews; 
  • Paying a specialist agency to transcribe audio-recordings of interviews (this can range from $120 to $150 per hour).

The Toolkit suggests low or no-cost alternatives to purchasing resources where possible. Remember that the methods described in this tool-kit are intended to be adaptable. For example, if you do not have the time or resources to record and transcribe interviews it may still be valuable and appropriate to your aims to conduct interviews that you record in written notes that you then write up and invite the storyteller to check, change and approve as a record of their story.

Who will take on key roles and responsibilities?

It’s helpful to identify which people in your organisation or externally will fulfil some key roles involved in storytelling projects. These are described below. Note that the same person or team of people could take on a number of these roles! And remember, the methods in this tool-kit are intended to be applied flexibly in a variety of situations. These roles aren’t proscriptive! However you may find your project runs most smoothly and has greatest impact when these roles are in place. 

 (See Template 1: Planning for Success: Questions to Consider)

Decision-makers

Who will consider the consumer evidence that the project produces? 

In this context, decision-makers are the people responsible for considering the consumer evidence produced by your storytelling project. Decision-makers are responsible for using this evidence to inform an organisational decision. They have the authority to make strategic decisions and are responsible for communicating their decision. 

Project manager or co-ordinator

Who will manage or co-ordinate the work? 

This person or people are responsible for quality assurance, co-ordination and upward delegation of any issues that require attention throughout the process. Ideally they should be involved from planning, through undertaking and to evaluation of a storytelling project. The project manager or coordinator plays an important role in supporting the Interviewer and Analyst to plan, undertake and assess interviews and analysis, and in ensuring that the process is conducted in ways that are respectful of consumers and minimise any potential risks to consumers. The project manager is responsible for ensuring any vulnerable people who participate in the project are protected. For example, it may be appropriate – and/or a legal requirement - for the project manager or co-ordinator to ensure that the interviewer holds a current working with vulnerable people registration. What action is required will vary depending on the project and the participants. Be sure to check any legal requirements that apply in your state or territory.

Interviewer

The interviewer is responsible for listening to consumer stories by using or adapting the semi-structured interview process outlined in this tool-kit. The interviewer is usually also the person responsible for explaining what is involved in participating to potential storytellers, assisting storytellers to provide their voluntary and informed consent to participate, and liaising with consumers to finalise their story post-interview. Interviewers may also transcribe audio-recordings of interviews. If your organisation is also creating Health Experience Wheels, the interviewer may be the person who liaises with consumers to create and finalise these. As the key person liaising with consumers and managing consumers’ information, interviewers are also responsible for making sure that data is managed in ways that respect the privacy and protect the anonymity of participating people. 

It is important to identify an appropriate person or people within your organisation to undertake this key role. There is guidance around selecting and supporting interviewers in the Gathering Consumers Stories section of this tool-kit.

Analyst

The Analyst may also be the Interviewer, but this isn’t necessarily the case. If you are undertaking analysis using the process suggested in the Analysing, Presenting and Using Patient Experience to Inform Decision-Making section of this took-kit, the Analyst is responsible for analysing consumer narratives using the suggested indicators of consumer-centred care and may also be a key person involved in creating Health Experience Wheels. 

Storytellers

Storytellers share their stories with the interviewer and with your organisation for the purposes you agree in the voluntary and informed consent process. This tool-kit aims to help you ensure there are opportunities for storytellers to be involved in, and have control of, the storytelling and analysis process. You can invite storytellers to:

  • Share their story in a semi-structured interview;
  • Check, change and approve the record of their story (this may be a transcript);
  • Identify or check what you identify as the key positive and negative experiences in their story;
  • Check, change and approve their Health Experience Wheel; 
  • Provide feedback about their experience of participation; and
  • Be informed about the outcomes of the decision-making task to which their story contributes. 

Five steps to successful storytelling

Good planning is essential to a good project that achieves good outcomes. The Consumers Health Forum suggests Fives Steps to Successful Storytelling that can be used when planning to gather and use stories to inform a decision-making task. This section of the tool-kit helps you to apply the Five Steps to your own storytelling project.

The Five Steps help you to define the objectives, scope and approach for your project. They also help you ensure you’ve put processes in place to support consumer control of their information, and to identify, minimise and manage risks to participants.

 The Five Steps are:

1. What: Define what your objectives are

2. Why: Define why you’re using stories to achieve your objectives

3. Who: Define your participants (who do you need to hear from, and how many stories you do need)

4. How: Define how you will invite and support participants, how you will identify and manage risks to participants and how you will support their control of the process.

5. Assess: Assess whether your objectives were met, and share what you find with participants

What

What is the objective of your decision-making task?

What decision are you making? 

This question asks you to be clear about the big picture, overall objective of your decision-making task. 

For example if your objective is, “To design an accessible, affordable and appropriate health service for our target group”, your decision may be “What service model will work best for our target group?”, or “Will Model A, B or C work best for our target group?” or “Do consumers prefer Model A, B or C and why?”

Why?

Why use stories?

How will stories contribute to the decision-making task or the work being undertaken?

Stories are one important form of evidence to consider in decision-making. Organisations often gather, or have access to, other forms of data that will also be used. Consider: How will evidence obtained from consumer stories relate to these other kinds of data?

  • Will stories help to put the ‘human face’ to statistics? Will they provide rich consumer experience data to complete the evidence picture?  Will they show gaps or areas that need further exploration or understanding?
  • Existing data may suggest an area of need (e.g. that certain services are underused by some groups). Stories help you to understand the reasons why.
  • Stories give you an insight into what matters from a consumer perspective.
  • Stories can be an effective method to hear the voice of vulnerable or hard to reach consumers

Using stories in a decision-making task can:

  • Provide information to inform better decision-making
  • Change perceptions of those involved in the decision-making by creating empathy
  • Focus decision-making on health outcomes and consumer experience

Note that you may want to use the stories you gather for multiple purposes. For example, as well as informing a specific decision-making process, you may want to use the stories you collect in staff education or training or community education material. Aim to identify all possible uses of stories before you begin, so that you can seek voluntary and informed consent from consumers for these different purposes. More information is provided in the Managing Risks, Consumer Control and Informed Consent section of this tool-kit.

Who

Whose stories do we need to hear?

After you’ve identified the purpose of storytelling and how it will contribute to your consumer and community engagement strategy for the decision at hand, consider whether there any consumer perspectives you particularly need to hear using this method.

  • Whose voice is not heard through other channels?
  • Which consumers are expected to be affected by/benefit from the health decision?
  • What are the criteria for inclusion in your storytelling work? For example, do you need to hear from consumers in a certain age group, or who speak a certain language? Are you looking for stories from women, men or both? Is it important to only include people who have a particular health condition, or who have been diagnosed for a certain length of time? Are you seeking stories from any health consumer who lives in a particular region, or who works in a particular occupation?
  • It’s important to be clear about the inclusion (and any exclusion) criteria, because this will drive not just who you need to hear from, but how you invite and support them to take part.

What’s in it for them?

Then it’s important to think about why these consumers might be interested and committed to sharing their time and their story.  A story should be considered a generous gift made with a clear understanding of the purpose it will be used for and the potential benefit that will result.  Ask:

  • Why would these consumers be willing to share their story to help us? 

How many stories do we need? 

How many stories you need to collect depends on what you want to do with the information. 

Just one story may be sufficient.  A single story can provide you with very useful information: it can flag areas where you may want to investigate processes and practices further (through more interviews, by gathering different kinds of qualitative or quantitative data, or another method such as a staff conversation or internal process review). 

If you collect several stories, you can begin to identify common themes and experiences. The more stories you have, the more evidence you have to identify issues and possible action. A useful rule of thumb is that once you begin to hear similar information, or the same themes, in a number of interviews you have built up a good bank of stories to work with. When you find that there are few or no new themes or information emerging in each subsequent interview, you’re reaching ‘saturation’ point, and may well have gathered enough stories. 

Remember that how many stories you need to gather depends on your objective! 

How

How will you invite and support the people you would like to be involved?

During your planning stage it is important to identify how you will invite the people you would like to be involved. 

  • Are members of local self-help groups, community organisations or health consumer networks potential participants?
  • Are former or current patients of different health services appropriate people to take part?
  • Is it appropriate to work in partnership with an organisation that has established relationships with particular groups of people you would like to invite? This can be appropriate when you are seeking to involve particular communities, people with whom you have limited existing relationships, or people who are marginalised or vulnerable.
  • Where appropriate, how will you seek to involve marginalised or vulnerable people? Are there relationships that you will need to build to invite these people? Are there barriers to their participation? Will particular support be required to allow their participation?
  • Are there any cultural considerations to be aware of?
  • If you are seeking participation from people of non-English speaking backgrounds or who speak little English, it is appropriate to identify whether an interpreter can be provided to assist you to listen to and communicate with the storyteller. Consider what impact the presence of an interpreter could have on the storyteller. For example, is it best to seek an interpreter of the same gender as the storyteller? Might a storyteller be reluctant to discuss certain health matters in front of an interpreter who is from their own local community due to privacy concerns? Develop a strategy to manage such concerns.
  • What practical support will you offer to participants? This could include covering any transport costs that storytellers incur during the process.  

Consider the diversity within your target group

You have already defined whether you are seeking to reach a specific target audience, or if the decision will affect a broader population. This guides whether or not it is necessary to invite participation from a variety of people in different situations and how essential it is to seek out diversity of gender, age, ethnic and cultural background, occupation and education level.

You don’t need to gather a representative population sample, but you should try to ensure that the diversity of the community whose experience you are seeking to bring to decision-making through storytelling, is reflected in the people you invite.  In short, seek diversity within the population you are sampling. For example, if your target group is women aged 40 to 50 with asthma, you might aim to hear stories from women of different cultural backgrounds, from women in different occupations and employment situations, and from women who have been diagnosed for longer or shorter periods of time.  

Inviting participation and informed consent

You will need to develop an appropriate strategy for inviting participation once you have identified potential participants. You might invite participation by describing your project at a meeting of a consumer organisation or community group whose members you would like target, or by sending letters or emails to people you have identified as possible participants. You might ask health and other services to share information about your project with their clients or service users. 

Provide information about the project and participation in writing. Your information should provide clear, plain English information about your organisation, the purpose of the interview, what kinds of topics or questions you are likely to discuss in interview, and what time commitment is required. There are useful guides available to help you make sure your project information is easy to understand. For example, try the readability calculator at http://www.learningandwork.org.uk/misc/SMOG-calcul...). 

Explain what you will do with the information that people share, how you will share any project outcomes with participants, and explain the protections you have put in place to protect people’s anonymity and privacy. More information is provided in the Consumers Stories section of this tool-kit.  

Remember that it can be difficult for people to revisit difficult health experiences. It’s important to encourage people to reflect on this before agreeing to take part, and to provide details of services that can assist in the event that people are upset after sharing an experience. 

The Project Information and Informed Consent sheets are important places to provide information that allows people to give their informed consent to interview. It’s very important to keep a record of people’s consent. 

If you would like to record interviews, ask for permission first. Allow people to record their agreement to be audio-recorded on their consent form. (Remember that while recording can help you to gain an accurate record of an interview, notes taken during or even after an interview can still help you to gain a good impression of a story and you can check your record of the conversation afterwards with the storyteller to ensure you captured their experience accurately).

Are there any risks?

Before you begin it is also important to consider whether there are any risks associated with the work you will undertake. You should take steps to identify and to manage any possible risks. 

  • Are there any possible harms that sharing a story could cause to individuals, their families or communities?
  • If you focus on one story, or some stories, to the exclusion of others, do you risk missing some essential information and excluding other people’s experiences?

There is more information about identifying, managing and minimising risks to consumers, and about informed consent in the next section, Supporting Consumer Control and in the Gathering Consumer Stories section. 

Will you require formal ethics approval?

The tools in this tool-kit help organisations to have a robust process in place to gather, analyse and act on consumer experience data. This is a powerful way to improve your responsiveness to consumer needs, and to improve the quality of your decisions and the services you deliver. Inviting consumers’ accounts of experience for these purposes does not usually require ethical approval by a Human Research Ethics Committee. 

If you plan to use the tools and method in a research project, and in some health service settings, you may require research ethics approval. Further guidance about when it is appropriate to gain human research ethics approval can be found at the National Health and Medical Research Council’s National Statement on Ethical Conduct in Human Research or by contacting the relevant Human Research Ethics Committee

Assess

As with all consumer engagement activity, you should reflect and assess the outcomes achieved.  This informs quality improvement and will help you complete the engagement cycle by thanking participants and letting them know the outcomes that resulted from their involvement.  This is fundamental to building ongoing relationships and trust.

Assess at two levels:

How did storytelling contribute to our decision-making?

Did we achieve our objective/s?

Remember to share what you discover with your participants.

(See Template 2: Five Steps to Successful Storytelling)

Managing risks, consumer control and informed consent

Identifying and minimising risks in storytelling

Be aware that it can be upsetting or distressing for people to talk about a difficult health experience. In some instances - such as an adverse event or when a person’s ill-health is accompanied by difficult personal circumstances - it can be re-traumatising to share the story of this event or events. It can be difficult for both interviewers and storytellers to predict whether this will be the case or to know which questions or topics could trigger strong emotions.[19] You can minimise the risk of distress to people who share a story by encouraging people to consider this possibility before they agree to take part. You can also provide contact details for services that can assist people experiencing difficult emotions, such as trauma or grief. You should always aim to use discretion and tact when you ask someone about their experience – if you think a question may be distressing, avoid asking it! If you must ask the question, let people know before hand that you would like to hear about their experience of this issue. Make clear that it’s optional to talk about any experience. (The Gathering Health Stories section of this tool-kit includes guidance about responding if a storyteller does become upset).

References:

[19] Sewell, Meg (2013) The use of qualitative interviews in evaluation (University of Arizona: Tuscon) 

Protect participant anonymity

People may worry that if health service staff identify them from their story, they might face negative consequences such as lower quality care or reprisals from treating health professionals. People might be concerned about personal impacts if colleagues, family members or friends read their story and identify them.[20] You can minimise these risks by assuring people that if you share their story (with their permission) you will do so anonymously, and that you will endeavour to remove any identifying information from the story before publication (if possible also providing the storyteller the opportunity to approve the final record of their story). 

(See Template 3: Project Information for Potential Participants (Example), and Template 4: Voluntary and Informed Consent Form (Example).

References:

[20] Guba, E. G. , & Lincoln, Y. S. (1981). Effective evaluation: Improving the usefulness of evaluation results through responsive and naturalistic approaches (San Francisco: Jossey-Bass)

What an interview is and isn’t

It’s important to be clear about what interviews are and are not. This helps support informed consent and consumer control of information. Interviews are a great way to learn about someone’s experience of health and healthcare. A good interview can be a powerful source of information for quality improvement, improved health policy and better decision-making in health organisations. Storytelling in interviews can provide essential information for system advocacy. 

Interviews aren’t an opportunity to seek or provide personal advocacy, or to redress or improve the specific personal situation of individual health consumers. Interviews are not counselling, nor are they a complaints process. They’re not a process for formally reporting an adverse event that may have occurred during a storyteller’s care or treatment. It is important to make the limitations of your storytelling project clear. 

This doesn’t mean there’s nothing you can do if a storyteller discloses a difficult experience to you. For example if a storyteller has experienced an adverse events or wishes to make a formal complaint about the care or treatment they received, you may be able provide information about avenues that people can pursue. You could explain where they can address a complaint about a health service or professional, or where and how to report an adverse event. What’s important is that you make clear what an interview is, and isn’t, before you begin.

Which consumers?

A common challenge for storytelling projects is that they – often inadvertently - overlook the experiences of some people, in particular people who are excluded or marginalised from health debates and health services. As a result storytelling projects may inadvertently present some consumer stories as though they represent the experiences of all consumers. This can further compound the exclusion of some people from services and policy-making.[21] To minimise this risk, you can plan to invite stories from diverse consumers. Decide who you need to hear from and consider the best way to reach people with whom you may not necessarily usually engage. For example, can you work with a partner organisation that has an established relationship with a particular cohort of people whose experiences you would like to better understand? What relationship might you need to build to better understand the situation of people you would like to talk to? What process would suit these people best? What does your project offer to them? If, despite your efforts, you are unable to engage people you have identified as appropriate participants, you should acknowledge that this is an area for further work, and that the decision you make has not been informed by direct engagement with some consumers.

References:

[21] Ball, Rachel (2013) When I tell my story, I’m in charge: Ethical and effective storytelling in in advocacy (Victoria Law Foundation: Melbourne), p50

Consumer control

In storytelling work, organisations seek stories to inform and improve their work. This is a powerful form of consumer engagement. However, it is important to recognise that consumers who share their story also place their trust in your organisation to represent, use and share their story ethically and in a way that they feel comfortable with. Therefore it is appropriate to invite consumers to control this process in so far as you are able. This involves inviting them to approve the final version of their story, involving them in analysis, letting them know if you have used or plan to use their story, and providing them with information about any outcomes of your work. Providing people with options to remain involved, beyond just sharing story, demonstrates your respect for participating people and will create stronger consumer evidence for decision-making.

Voluntary and informed consent

Making sure that people give their voluntary and informed consent to sharing their story is an essential way of supporting consumers to be in control of how and whether they share their experience with you.[22] To give free and informed consent, people need to know: 

  • Why you are asking for their story
  • What you would like to talk to them about
  • What you’ll do with what they tell you
  • In practical terms, what their participation will involve
  • Any possible risks to them that they you can identify
  • How you will inform them about the outcomes or findings of your work. 

It is worthwhile considering whether there are any other purposes for which you might use consumer stories, other than to inform the decision-making task you have identified. For example, many healthcare organisations find that consumer stories are very helpful for educating staff about consumer experience and consumer perspectives, or for educating their wider community about these matters. If you would like to use stories for these purposes, you must seek consumer’s consent. Clearly outline the different purposes for which you’d like to use stories, and allow people to give their consent to one or all of these. If using stories for educational purposes, specify the audience (e.g. doctors and nurses in your health service, health professionals in your region, or health services users in your region), and if possible specify the way the story will be shared (e.g. in a report, in learning or training material, or on your Internet site). Request time-limited consent to use the story, for example for 12 months or 2 years. You will need to have a process in place to ensure that the story is no longer used after the time period expires.

References:

[22] Ball, Rachel (2013) When I tell my story, I’m in charge: Ethical and effective storytelling in in advocacy (Victoria Law Foundation: Melbourne), p50

Gathering health stories

This section of the tool-kit provides a step-by-step guide to gathering stories of health, healthcare and health outcomes. It introduces a consumer-centred framework for storytelling, called the patient life journey. The next section provides a guide to semi-structured interviewing using the patient life journey framework.

A framework for storytelling: the patient life journey

The life journey of patients is a flexible framework for understanding consumer experiences, and the many factors that shape health outcomes.

Although health experiences are diverse and highly individual, accounts of similar experiences often describe similar stages. For example, people with a particular condition may undergo similar experiences of ill-health, self-care, help-seeking, diagnosis, treatment and recovery, and living with a condition.[23]

Journeys of health and interaction with healthcare services may move through some or all of the following stages:

  • Prevention
  • A change in health
  • Seeking assistance
  • Diagnosis
  • Treatment
  • Life with a condition
  • Recovery
  • End of life

Remember that the patient (or carer) life journey is a flexible framework. In some journeys, people will move through each stage chronologically. Some stories may describe all these stages, but not be told chronologically. Other stories may describe just one stage in the journey. Some stories may move through several cycles of a number of stages. You may need to add extra stages if you realise that these are important to consumers who share their stories.These stages can be applied to many different questions and contexts.[24] They provide a framework for enquiring about people’s experiences. 

Medical, clinical, social, personal and community factors shape people’s experience at each stage of the journey – and the overall experience and outcomes of their journey.[25] The advantage of the life journey framework is that it allows consumers to tell a story about these multiple factors in their own words, but with reference to a simple framework that can help them to talk about their story. This makes sure that important experiences aren’t overlooked, and also provides a framework for interviewers and organisations that will use the interview data.

References:

[23] See Detmer D.E, P.D. Singleton, A MacLeod, S Wait, M Taylor and J Ridgewell (2003), The Informed Patient: Study Report (University of Cambridge Judge Institute of Management: Cambridge); International Alliance of Patients’ Organisations (2009) Patient-Centred Healthcare Indicators Review (IAPO: London; Department of Health (2006-2012) National Service Improvement Frameworks (Commonwealth Department of Health: Canberra)

[24] It may be appropriate to adapt the stages in the patient journey in some circumstances. For example, people visiting hospital for surgery may move through similar stages of travelling to the hospital, admission, seeing a specialist, an operation, recovery, going home and aftercare. For people living in rural and remote areas travelling for treatment or care can be an important stage in the journey.

[25] Dwamena F, M Holmes-Rovner, C M Gaulden S Jorgenson S, G Sadigh, A Sikorskii, S Lewin S, RC Smith, J Coffey, A Olomu (2012) Training healthcare providers to be more 'patient-centred' in clinical consultations (Cochrane Collaboration, Cochrane Consumers and Communications Review Group: La Trobe University, Melbourne)

Why use the patient journey framework?

The patient journey framework gives you a practical guide to gathering stories that matter to patients and carers, and relating these stories to wider issues for health services and the health system. This information can identify critical intervention points for improving health outcomes.

People’s stories of health and healthcare can reveal the whole-of-person impacts of a health issue, at each stage in the patient life journey. Stories can demonstrate whether the care and treatment a person has received is patient-centred, at each stage of their journey: for example a story can reveal whether a person gave their fully informed consent to a procedure, whether they were provided with sufficient information about their condition, and whether they were involved in decision-making about their care.

Stories can show when and how policies and programs that sit outside the health system impact on a person’s health and their health outcomes. It’s not necessary to enquire directly about these issues in interviews – they will emerge along with other experiences that are important to the storyteller.

The framework below summarises experiences that are common at each stage of the patient life journey; and lists indicators of patient-centred care and good health outcomes that apply at each of these stages. The framework also summarises what stories can tell us about individual experiences of health and healthcare, and about health service and health system issues, at each stage of the patient life journey.

Patient life journey interviewing: A guide

An interview is a great way to gain an in-depth understanding of someone’s experience: what happened to them, how they felt about it, and what they would change if they could. It’s a practical method for collecting consumer experience data that can improve decision-making. 

An interview of this kind can be conducted by telephone or in person. Face-to-face interviews are recommended where possible. These allow you to observe non-verbal cues that can help you understand what was important to the storyteller, and to use non-verbal communication yourself to encourage the storyteller to share what was important to them. A face-to-face interview also means that storytellers can have a carer or support person with them if they’d like to. Telephone interviews have the advantage of allowing you hear from people who might have difficulty travelling to meet you, or who don’t live in your immediate area. However you lose non-verbal cues and it may be more difficult to build rapport over the phone. 

                                           

This tool-kit provides advice about conducting semi-structured interviews. These can be described as a lightly structured interview, with a respectful but informal feeling. It may help to consider them as ‘structured conversations’.

The advantages of this approach include:

  • It allows people to tell their own story and highlight what is important to them;
  • The interviewer can make sure that key issues have been considered and that issues are explored in depth where appropriate;
  • Unlike in written testimonials or case studies, interviewers can check they’ve understood or ask extra questions;
  • Unlike most surveys, interviews allow a wide-ranging exploration of a person’s experience over time, with many services and in different settings; and
  • The Patient Life Journey framework gives you a flexible structure to help interviewees to tell their story, and help interviewers to understand it. 

Remember that the patient life journey framework and much of the advice about semi-structured interviewing can also be applied to other settings. For example the open-ended questions suggested in this section may also be modified or used in group consultation settings. You could also apply them in ‘everyday’ informal opportunities to converse with and learn about consumer experiences. 

Choosing and preparing interviewers

This section provides guidance about how to choose and support interviewers.

Who makes a good interviewer?

Semi-structured interviewing requires particular skills. Although many people can learn and improve their skills in this area, it is important to identify interviewers who have relevant skills, personal qualities and/ or experience. People who make good interviewers:

  • Are good listeners 
  • Have good communication skills, in particular active listening;
  • Have good interpersonal skills, including displaying tact, empathy and respect in interactions with people, including people in difficult, emotional or upsetting situations;
  • Have a genuine commitment and interest in listening to and understanding consumer perspectives through one-to-one interviewing; and
  • Have time-keeping and planning skills.[27]

It can’t be stressed enough that a good interviewer is first and foremost a good listener. If you have a genuine interest in listening to someone’s story, that is a solid foundation for developing skills in interviewing and inviting people to share their stories in a semi-structured manner. 

It’s important to clarify what the interviewer’s role is, and isn’t. The interviewer’s role is to invite the story, to listen, and to occasionally prompt the storyteller to learn more about their experience. Your role doesn’t and shouldn’t involve providing personal advice, medical advice, counselling services, personal advocacy or assisting a storyteller to file a formal complaint. Even if you are qualified to provide certain professional services (such as medical advice or counselling) it’s not appropriate to do so in the context of a storytelling interview.

References:

[27] NHS Modernisation Agency (2003) Learning from patient and carer experience: A Guide to using Discovery Interviews to Improve Care (National Health Service: London)

Preparing for interviewing: hints and tips

  • Make sure that the storyteller has received information about the project and has signed and returned an informed consent form
  • Review your interview guide and questions
  • Arrive early for the interview (whether this is telephone or in-person it can take a little while get comfortable) 
  • If you are interviewing in person, make sure the interview space is quiet, private and welcoming.
  • Make sure you are familiar with any audio-recording equipment you are using, and check that this works before you start! 
  • Take a pen and paper just in case your recording equipment fails you – taking some notes may help you to remember the story that you hear.

Preparing an interview guide

In your interviews, you won’t necessarily ask exactly the same questions of everyone you interview, but every interview will be about the stages in the patient life journey. This approach has the benefit of gathering stories in people’s own words, while ensuring that you gather information that can be compared and analysed against the same criteria. 

To get the most out of your interviews, work up the best interview guide you can, and be familiar with it

The stages of the patient life journey form the basis of your interview guide;

  • Prepare a number of optional prompting questions to encourage interviewees to discuss their experience of these stages. 
  • As you prepare your interview guide (and when you use it in interviews), remember that it’s better to ask fewer questions than more! The storyteller should do most of the talking – a rule of thumb is that they should talk about 80% of the time.[28]

    Your job is to listen, and encourage a comfortable narrative flow. 

  • Use open questions that encourage the storyteller to talk about what happened to them. Avoid questions that can be answered ‘yes’ or ‘no’. 

References:

[28] NHS Modernisation Agency (2003) Learning from patient and carer experience: A Guide to using Discovery Interviews to Improve Care (National Health Service: London) 

Developing your interview guide

The aim of a loosely-structured or “semi-structured” interview is to invite consumers to tell their own story, in their own words. The role of the interviewer is to listen actively and with empathy, clarify and seek additional information when appropriate, and ensure that all the key issues and areas are explored by the storyteller.[29]

Some interviewees will appreciate being asked prompting questions, as this provides a structure for their story and their thinking. Others will feel comfortable to tell you their story with little, if any, prompting. 

The stages of the patient life journey are the topics that every interviewee should be invited to talk about, with prompting questions built around those topics.

Interview topicsIncludes, for exampleExamples of possible prompting questions
About youOverall health, work and family situation, any personal characteristics that might impact on health or healthcare experiences (such as age, gender, ethnicity, culture, rural/regional/remote/urban location, SES status)How would you describe your health, overall?

What sorts of health services do you use?

PreventionPreventative health behaviours, staying healthy,Do you do anything in particular to stay as healthy as you can be?
A change in healthFirst symptoms, a pregnancy, ageing, an accident.When did you first notice that something in your health had changed? What did you do about that, if anything?
Seeking health assistanceVisiting a GP, attending accident/emergency, going to hospital, attending an allied health professionalWhen did you first seek help from a health professional?
Information seekingSearching websites, asking family or friendsWhere did you go for information?
DiagnosisDiagnostic tests and imaging, referrals, diagnostic procedures, being told the diagnosisCan you tell me about how you came to be diagnosed?
TreatmentHospitalisation, treatment as an outpatient, medicines, devices, allied health treatment,Tell me about your treatment?
Life with a conditionSelf-care, secondary prevention, medicines and treatments, mental, emotional and physical wellbeing, impacts on work and community participation, family and home life.Has much changed in your life as a result of your condition? Do you anything different now, to look after your health?
Key messagesOverall impressions, key recommendations for change, what mattered most.If a friend of yours was diagnosed with same condition, what would you tell them to prepare for?

If you could change any one thing about your care, what would that be?

As you are listening to someone’s story, keep in mind the aspects of patient-centred care, and the health system and service issues detailed in the Patient Life Journey Framework. You don’t need to ask directly about these issues. If they are important to a consumer, they are very likely to discuss them without being asked, especially because the semi-structured approach to interview involves you encouraging people talk about what has been important to them. It is often more powerful if consumers raise these sorts of issues themselves, rather than at your prompting. However, asking directly can encourage people to discuss things they might otherwise overlook. You may like to incorporate some prompting questions that invite people to talk about their experience of some of these issues. Below are some examples of how you could do this.

Patient-centred care domainPrompting question
Coordination of careWould you describe the relationship between the different services/professionals that treat your condition? Who makes decisions about your care and treatment?
Continuity of careWhat happened after you left hospital? Who looked after your health? Did the hospital or other services follow up once you were back home?
Informed consentDid you know what to expect before you had the treatment/procedure? Were there any surprises?
Access to health servicesHave you always been able to access the service when you needed to?
Respectful care and treatmentThinking about all the different health professionals you’ve dealt with, how would you describe your relationship with them?
Overall experience of careIs there anything that’s worked especially well in the care you’ve received? Is there anything that hasn’t worked well?

We include an example interview guide at the end of this resource (Template 3: Example Interview Guide). Whether you use this example guide, adapt it or develop your own, here are some tips for developing a questionnaire that meets the needs of interviewers and interviewees:

References:

[29] Sewell, Meg (2013) The use of qualitative interviews in evaluation (University of Arizona: Tuscon); 

Tips and hints for developing an interview guide

  • Consider starting with simple questions, which have straightforward answers. For example, you might begin by asking for some demographic information, such as age, occupation or years diagnosed with a condition.
  • (If you are asking for demographic information, ask only for information that is necessary in order to understand a story, and make sure that storytellers know it is optional to provide this information.)
  • It’s always best to ask open questions. This allows interviewees to describe their situation and perspective in their own words. Your aim is to encourage a narrative, not ‘yes’/’no’ answers.
  • Use neutral language. Rather than “have you found health professionals disrespectful?” or “were your nurses friendly?”, it’s better to ask a neutral question like “how would you describe the attitude of health professionals?” or “can you tell me about your nurses?”
  • If interviewees can tell what your opinion is, or what issues are important to you, they may try to meet what they what they think your needs are, rather than telling you what is important to them.
  • Keep your language as simple and clear as you can. Avoid professional terms as much as possible and steer away from jargon. For example, rather than ask about continuity of care, or a patient’s “transition” between services, ask how different services and health professionals work together or what happened after a storyteller left hospital or was referred to another service.
  • You can ask someone you know – perhaps a colleague who has not worked on developing the interview guide, and ideally someone unfamiliar with the area you are investigating – to review your questions. If they have trouble understanding a question, it’s likely interviewees will too![30]

If you would like to record interviews, you must seek permission. Interviewees should record their agreement to be audio-recorded on their consent form. 

(See Template 5: Interview Guide (Example).

References:

[30] Insites (2013) Tips for Conducting Interviews  <http://www.insites.org/CLIP_v1_site/downloads/PDFs/TipsCndctIntvws.4C.8-07.pdf>; Evers, Jeanine and Fijgje De Boer (2012) The Qualitative interview – art and skill (Eleven: The Hague); NHS Modernisation Agency (2003) Learning from patient and carer experience: A Guide to using Discovery Interviews to Improve Care (National Health Service: London)

Conducting and recording interviews

During interviews: hints and tips

As you’re starting: 

  • Start by introducing yourself and thanking the person for taking part. People may feel a bit nervous or uncertain about taking part in an interview: you can help to set someone at ease by being friendly, calm and relaxed yourself.
  • Explain the purpose of the interview in simple language. 
  • Remind the person that all questions are optional, that there are no right or wrong answers. 
  • Remind the person that their participation is voluntary and they can stop the interview at any time.
  • Explain about how long it will take.
  • Check whether they have any questions before you begin. 
  • Be familiar with your interview topics and questions. 
  • Let interviewees know generally what areas you’d like to know about – this can help people feel prepared and ready to talk.

During the interview: 

  • Listen more than you talk, and speak slowly and clearly when you do.
  • The more you let people talk in their own words, the more you’ll learn about their experience.
  • Listen actively to what the interviewee is saying. You may find it helpful to tick off areas on your interview guide as people address them. 
  • If something isn’t clear, you can ask prompting questions such as “can you tell me more?”, “why do you think this was?”, “what happened then?” or “could you give me an example of that?” You can summarise what people have told you to check you’ve understood. 
  • Be aware of your body language, especially in face-to-face interviews. Nod and encourage if that is your natural style, but try not to let it show if you find something especially interesting (or less interesting!). This can encourage people to try to tell you more of what they think you want to hear, rather than what is most important to them. 

As you’re finishing the interview:

  • When you finish, ask if there are any questions.
  • Let the person know what the next steps will be, including if and when you will next be in contact.
  • Make clear that you welcome a phone call at any time with questions. If you are not always available, let them know when you are.[31]

     

References:

[31] Insites (2013) Tips for Conducting Interviews  <http://www.insites.org/CLIP_v1_site/downloads/PDFs... Modernisation Agency (2003) Learning from patient and carer experience: A Guide to using Discovery Interviews to Improve Care (National Health Service: London); Evers, Jeanine and Fijgje De Boer (2012) The Qualitative interview – art and skill (Eleven: The Hague)

Recording interviews

Record your interviews. You can record an interview by taking as many notes as you can during or after the interview. You may like to audio-record or video your interviews to obtain the most accurate record possible but you must first ask for and obtain permission from the storyteller, and you should double check that this is OK before you begin recording. Having a verbatim record of what the storyteller says allows you to share their story in their exact words, and this can make consumer stories as powerful and compelling as possible. If you are audio-recording in order to then prepare a transcript of the conversation, you can use a purpose-designed audio-recorder or the record function on a mobile phone. Whatever recording equipment you use, it’s important to permanently delete each audio-file from your equipment as soon as possible. This is an important part of protecting the privacy and security of consumers’ information.

Responding if a storyteller is upset

It can be upsetting to share a story about a difficult health experience. If someone has experienced harm or trauma, talking about their experience can cause them to re-experience it. In this tool-kit we encourage you to recognise, limit and manage these risks by encouraging potential participants to consider what impact it could have on them to share a story about their health and care. This occurs through the voluntary and informed consent process. The template informed consent and project information sheets we provide also include contact details for reputable and free national services that provide telephone counselling to people in difficult, stressful or traumatic situations. We also suggest that people discuss the project with someone they trust, or with a trusted health professional before deciding to participate. 

Nonetheless it can occur that a storyteller becomes upset during an interview. Be alert that people may not show obvious signs of distress during the interview but may nonetheless find it distressing to share a story. It is a good idea to plan how you might respond in these situations. 

  • Remember that your role is to listen. 
  • Remember that some people may be upset by sharing their story but still have a strong desire to do so.
  • Always offer the person the option to stop the interview. 
  • You may like to have some words ready to say, or read to storytellers. For example, you might say:
    • It sounds like you’ve had a difficult experience that is upsetting to talk about. Would you like to stop the interview now? 
    • I suggest we stop this interview now. Is that OK with you? It sounds like you’ve had a difficult experience and it’s upsetting to talk about it. 
  • You can remind the storyteller that the information sheet for the project includes contact details for free national telephone counselling services. 

If a storyteller tells you they would like to make a formal complaint about their care or treatment, or if they have experienced an adverse event, you can provide them with information about how to make a formal complaint or report an adverse event. 

After the interview

Debrief the participant

This involves making sure they know what the next steps in the process will be. Let them know expected timeframes for returning the record or transcript of their interview, and the process for checking and finalising the record of their interview. Thank them for their participation. If appropriate, remind them that there is information and contact details for counselling services in the project information sheet they received.  Let them know that you are available for any questions about the project or the interview, and be clear about what days and between what times you are available.

Check that your recording worked!

It’s good to do this right away, as if the recording didn’t work you are likely to still remember enough about the story to write down at least some aspects of it. This can also provide rich information about consumer experience. 

Reflect on how it went

You may like to jot down some notes about the interview, or talk about the interview with a colleague. Did some prompting questions work better than others? How did the interviewee react to your questions? How did you feel during the interview? Are there any improvements you could make to your interviewing approach? Now you’ve completed an interview, is there anything you think needs to be added to your interview guide? 

Debrief yourself

Ask a colleague to be available to talk about the process. This can be very helpful if anything happened during the interview that you found difficult, challenging, noteworthy or interesting. 

Creating a record of the interview

You can create an accurate record of interview by taking notes during and/or after the interview and by writing these up into a record of the story as soon as you can after the interview. Make sure you invite the storyteller to check, make any changes and approve your record of the interview as accurate.

Participant approval and finalising transcripts

Give interviewees an opportunity to check the transcript and/or final version of their story – the information that you plan to share with others in your organisation or publicly. It can happen that people regret sharing certain information in interview, and giving people a chance to approve their transcript is an opportunity for them to retract information they do not want published, or to add anything that they forgot. People may find having a copy of what they say a useful summary of their own experience! 

Transcribing

Transcribing an audio recording is a very good way to gain an accurate record of what someone tells you in an interview. 

Written interview notes can reflect the essence of a story, but transcription captures the detail and nuance of how someone speaks in their own words. This is what makes transcribed data compelling. 

It takes time to transcribe. Set aside more time than you estimate you’ll need. On average it takes 2.5 to 3.5 hours to transcribe a 1 hour interview. 

You can have an external agency transcribe the interview for you. This can cost $120 to $150 per hour. In addition to the potential cost saving, there are other benefits to transcribing interviews yourself. You’ll become more familiar with the story and the interview data, and you’ll notice details you might miss otherwise. After you’ve transcribed a number of stories, you may well notice some common themes beginning to emerge. Noticing themes is a very important part of analysing interviews and stories – so transcription also gives you a head start on this process. In this sense transcription is an investment in understanding “people data”, and can save you time in the analysis phase.[32] 

You should remove from transcripts any specific information about places or people that could allow a reader to identify the person’s identity from their story.

There are different transcription software available, including the free software Express Scribe, available at www.nch.com.au.

References:

[32] Gibbs, Graham (2007) Analyzing Qualitative Data (SAGE: London), pp 38-45.; NHS Modernisation Agency (2003) Learning from patient and carer experience: A Guide to using Discovery Interviews to Improve Care (National Health Service: London) 

Storing information

You will need securely store both audio-recording and transcripts. These must be stored separately from the consent to participate form. It can be helpful to devise a system that allows you to associate the transcript with the person’s name, but you cannot write the person’s name on their transcript. You could label transcript and consent form with the same identifying number. Store them separately to protect anonymity.[33] You must delete audio files from any audio-recording equipment you use. It’s your responsibility to ensure you know and comply with national privacy legislation.

References:

[33] For more information about best practice in this area see the National Health and Medical Research Council, Australian Research Council and Universities Australia (2007) Australian Code for the Responsible Conduct of Research, Section 2.3 (NHMRC, ARC and Universities Australia: Canberra) 

Analysing and presenting consumer stories to shape decision-making

Introduction

This section of the tool-kit steps assists you to analyse and present consumer stories so that they can shape strategic decision-making. 

  • It introduces you to CHF’s Health Experience Wheel, a visual tool for powerfully communicating the key information in a consumer story. 
  • It supports you to use indicators of good consumer experience to identify any areas where changes or improvement may be needed (and any areas where policies or services are making a positive difference to people’s health).
  • It also assists you to analyse and document themes in one or more consumer stories.

Previous sections of this tool-kit gave advice about gathering and documenting consumer stories in semi-structured interviews. You may have video-recorded or audio-recorded these interviews. You may have transcribed any audio-recordings you made; or you may have documented a story by taking notes and writing these up into a record of a story that was then approved by the storyteller. Whatever technique you used to gather and document these stories, the narratives you collected provide important information about consumer experiences of health and health care. 

There are many ways you can use consumer stories to inform your work. These include: 

  • Sharing a story in part of full to educate staff, Board members or other decision-makers about consumer perspectives on the issue, policy or service that they are involved with; 
  • Using excerpts from videos, audio, transcripts or written stories to provide evidence of an argument you wish to make in a submission or report; 
  • Using analysis techniques (including those described in this section) to identify and draw out key themes in one or more interviews. 

It’s good to remember that there are many ways to gather, analyse and present consumer stories. There’s not a single best approach – the right approach is the one that your organisation and the people who tell you their stories agree will work best in your situation. The suggested approach in the rest of this section is intended to help you increase the number of good storytelling ‘tools’ you have at your own ‘tool-kit’. 

The Health Experience Wheel

CHF has developed and piloted the Health Experience Wheel, a tool for powerfully communicating the key information in a consumer story. The Health Experience Wheel is a simple visual representation of the most positive and negative interactions a storyteller had with the health system in their own story of a ‘patient life journey’. Health Experience Wheels are intentionally simple in order to represent a story’s key information in a compelling and easily consumable format. They show clearly what mattered, and what could have been improved, in a storyteller’s experience. 

The Health Experience Wheel shows:

  1. The stages in the patient life journey.
  2. A quote from a storyteller, describing the single change that could have made the biggest overall difference to their experience. This is described in the centre of the Wheel.
  3. Key experience points in each stage of the patient life journey. The Health Experience Wheel presents these experience points as simple, easy-to-understand emoticons (happy and sad faces). These experience points identify the key positive and negative experiences that a storyteller had with the health system in their story of their patient life journey.
  4. Each experience point is accompanied by a brief summary of what happened at that point in the story, usually including a description of the experience in the storyteller’s own words.

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Sample Health Experience Wheel
A sample of a Health Experience Wheel

What is an experience point?

An experience point can be defined as an event or occurrence which leaves an impression on someone. Experiences are made up of emotions, sense and thoughts. Significant experiences can be defined easily by most people as positive or negative. 

Why use happy and sad faces?

The Health Experience Wheel uses happy and sad face emoticons to help visually represent key experiences in a consumer story. Of course, people have a variety of experience responses, but by keeping it simple with happy and sad faces, we derive the most important points most naturally from storytellers and communicate the essence of a story most effectively to decision-makers. These experience points can easily tell us what was good or bad, positive or negative, made storytellers feel good, and made them feel bad. In addition to this, the happy and sad faces make it easy to see what the ratio of good and bad experience points were, and to get a compelling sense of the overall experience without having to do too much thinking or interpreting. 

While ‘happy’ and ‘sad’ faces are easy to understand visual depictions of positive and negative experiences of health system, they may not always be appropriate tools. For example in the case of stories that include experiences of signficant emotional pain, the emotional register of ‘happy’ and ‘sad’ may not respectfully or adequately communicate the depth of emotion and experience felt by a storyteller as a result of their health system experience. Remember that the Health Experience Wheel isn’t the only way to effectively present and communicate consumer stories. 

Always reflect and use your judgement about whether the Health Experience Wheel is the best tool you have to communicate each story. If you intend to use the Health Experience Wheel tool, make participants aware of this before you invite them to tell their story – you can provide sample Experience Wheels so they know what they are agreeing to.

Why create Health Experience Wheels

The advantage of the Health Experience Wheel is that it can communicate the key aspects of a story to anyone very quickly and effectively, regardless of whether they are someone very senior in a decision making role in an organisation or a health consumer sharing their story. This makes Health Experience Wheels a valuable supplement to full stories as told by consumers (in video, audio, transcript or summary), because the Wheels allow readers to quickly grasp the essence of a story.

The Health Experience Wheel is best suited to consumer stories that:

  • Have clearly defined stages (such as ‘first symptoms’, ‘diagnosis’, ‘treatment’ and ‘recovery’);
  • Include positive as well as negative experiences of the health system;
  • Are appropriate to communicate using the emotional language of ‘happy’ and ‘sad’ and visual depictions of happy and sad faces.

From consumer story to Health Experience Wheel: Step by Step

It takes a few steps to create a Health Experience Wheel. We encourage you to invite storytellers to be involved at key points in this process. It’s important to provide storytellers with opportunities to control their story and the way it is told. In particular, make sure they approve the final Health Experience Wheel that you will use for purposes that storytellers agree with you. 

1. Identify the positive and negatives experiences in the story. Once you have a transcript or other written record of a story, work with the storyteller to identify the most important positive and negative experiences in their transcript with happy and sad face stamps. There are different ways to do this. For example, you could invite storyteller to use different coloured highlighters or pens to identify the most important positive and negative experiences on a paper copy of their story, by highlighting the relevant sections of text. You could ask storytellers to identify the positive and negative experiences by using a highlighter tool in a computer word processing program. You could talk with storytellers and together identify the high and low points in their story. Or, you can identify what you judge the most signficant positive and negative health system experiences in a story to be, and check your interpretation with the storyteller.

2. Enter the information into the Real People, Real Data spreadsheet. CHF provides an Excel CSV spreadsheet (available on the Templates page) for you to enter the information you want to display on the Health Experience Wheel. This could include some or all of the following:

  • If it is appropriate to the aim of your project, record any necessary demographic or other profile information about the storyteller in the top section. This will be displayed in the centre of the Health Experience Wheel

(Remember: the inclusion and exclusion criteria for your storytelling project may well provide you with all the demographic information you require about participants. See the Planning section of this tool-kit.)

  • Add the text from the story that corresponds to each positive and negative experience point (one experience point per row of the spreadsheet).
  • Add a happy or sad face emoticon next to each experience point
  • Add a short summary description next to each text point to succinctly describe what happened. 

The aim of this step is provide a concise summary of what happened in the experience, from the storyteller’s perspective. Aim to keep your language neutral and non-judgemental, and as far as possible use the storyteller’s own words to summarise their experience.  

3. Add a patient life journey stage to each experience point in the spreadsheet. These stages will be the same as the stages you identified as the basis for your patient life journey interview. 

4. Use CHF’s (free) online Health Experience Wheel tool to automatically generate your experience wheel. CHF is glad to provide you access to this tool. Contact CHF for more details.

5. Provide the Health Experience Wheel to the storyteller to check, suggest any changes and approve.

From Consumer Story to Health Experience Wheel: Step by Step in Pictures

Step 1: A consumer story, showing experience points

“So when I came home and I went to my regular GP, I suppose I sort of thought he would take me and say, wow you’ve always been so healthy and I never see you, let’s really make sure we really cancel out every single thing you might have. But instead, he said, I think you’re being very anxious, and you’re at a stage in your life when that can happen, just go home and relax and you’ll get over it. And I can understand that, but I got progressively sicker, to the point that I couldn’t drive - and we live in a rural area, and I had a pre-schooler at the time...

So my struggle with my health was it just went from black to white, from super healthy, always trusted my body, could do super hikes, do anything, to really feeling a bit vulnerable and afraid of what it might do. I started to notice the shaking in my left hand. So that was a lot of stress so I just figured perhaps it was the stress. I went to the doctor and said I’ve been under a lot of stress and I’ve got this tremor. And she said well if it was stress or coffee the tremor would be in both hands. But it’s just one hand. … So I went along to the neurologist, and he said you don’t need an MRI. I know what you’ve got, you’ve got Parkinson’s disease.

I said to him, do you have any books or anything I could read about this? And he said, there are some good websites, but look, we won’t talk about it now. You go and have your MRI and come back in a week and we’ll talk about what you have to do. So I went out into the waiting room, having just been given that diagnosis and I went home by myself in the car and called in at Borders and got a book about Parkinson’s disease had a cup of coffee and read it and then went home… That was the biggest shock for me, just how inadequate at dealing with people some specialists are.

Step 2: Transfer the narrative into the Real People, Real Data spreadsheet

The spreadsheet is available on the Templates page

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Sample Real People, Real Data spreadsheet
Sample Real People, Real Data spreadsheet

Step 3: Use the Health Experience Wheel tool to automatically generate the wheel

The free online tool is available at https://expwheel.chf.org.au/

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Sample Health Experience Wheel
A sample of a Health Experience Wheel

Step 4: Finalise with storyteller

Invite the storyteller to check and approve the Health Experience Wheel.

Analysing patient experience using indicators of consumer-centred care

Introduction 

This section supports you to analyse consumer experience narratives and Health Experience Wheels, using indicators of consumer-centred care.

This allows you to create a more detailed experience map, that demonstrates positive and negative experience points, but also identifies how the consumer experience tracks against validated measures of good consumer health experiences and good consumer health outcomes.

Mapping experiences against clearly articulated criteria can be a useful step in analysis. This allows you to relate themes and information in the consumer stories you have gathered, and the Health Experience Wheels you have created, to well-established indicators of good consumer-centred care. These criteria are likely to be relevant to any decision-making task that affects consumer health. Analysing experiences against these criteria can allow you to identify, for example:

  • Which, if any, of these criteria were particular or recurrent issues for consumers;
  • At what stages in the patient life journey consumers experienced particular issues related to any of the criteria;
  • In which of these areas experience was positive; and
  • Where attention should focus in order to improve the quality of patient-centred care and support improved consumer health outcomes.

This is valuable information to shape decisions that will improve consumer experience and consumer outcomes. 

About the indicators of consumer-centred care

The Consumers Health Forum of Australia (CHF) suggests you use the following analysis criteria. These criteria reflect well-established understandings of the aspects of good care and good health that lead to good health outcomes. These criteria appear in many widely used domains of patient-centred care, and in authoritative typologies of the aspects and determinants of good health. Indeed as you will see, the definitions we suggest for many of the criteria are drawn directly from one or more of these recognised typologies. These criteria also reflect CHF’s experience as the national peak body representing health consumer interests: they are fundamental measures of the quality of Australia’s health and healthcare and they are what make a difference to health consumers.  

In your analysis of consumer narratives, you can choose:

  • To use all of these criteria;
  • Several of them;
  • Just one; 
  • Other criteria that are relevant to your decision-making task; or 
  • A combination of your own criteria and CHF’s suggested criteria.
  • You can apply one or more criteria to every experience point in your Health Experience Wheel, or to one or several of the experience points;
  • And/or you can apply one or more of the criteria to sections of a story or a whole story (a transcript, video-recording or in any other format).

Suggested analysis criteria

CriteriaDefinition
1. Access, equity and affordability
  • People can access services to address their healthcare needs and to manage their condition/s. This includes access to safe, quality, timely and appropriate services, treatments, preventative care and health promotion.
  • Healthcare services, professionals and the healthcare system recognise and address dimensions of health inequality such as those related to geographic location, socioeconomic status, language, culture or Indigenous status.
  • People can afford the treatment and care that they require.[33] 
2. Information and understanding People are provided with accurate, relevant and comprehensive information, that considers their individual condition, language, age, understanding, abilities and culture. This healthcare information is open, timely and appropriate and delivered in a way the consumer can understand. This information includes (but is not limited to): discharge information, information about medicines, treatments and devices, danger signs to look out for and clear, comprehensible information for self-care.[34] 
3. Informed consent (including informed financial consent)
  • Patients are provided with all the relevant information to support their agreement (or not) to any medical or health procedure. This involves being informed by their treating professional/s about their options, understanding the benefits and any risks associated with the procedure and being supported by their treating professional(s) to make a decision about their care.
  • Patients are provided with clear, timely and comprehensible information about the cost of treatments and procedures. [35] 
4. Appropriate carePatients receive the right care, at the right place, at the right time, and from the right professional.
5. Respectful carePatients receive care that demonstrates respect for their culture, beliefs, values and personal characteristics, and for their preferences and expressed needs.[36] 
6. Whole of person carePatients receive care that recognise and responds to their mental, physical and emotional wellbeing.
7. Coordinated care and supported transitionsPatients experience care that is coordinated and integrated of care, with smooth transitions between different services.[37]
8. Safety and quality
  • Care and treatment do not harm the consumer.
  • Any harms and risks involved in treatment are clearly communicated and understood by the consumer.
  • If an adverse event occurs, this is openly disclosed.
  • Consumers who have not received appropriate care can make complaints and seek restitution through complaints and oversight mechanisms.
  • Healthcare organisations have a culture of openness and transparency around safety and quality, and processes to respond to complaints and feedback.
  • Healthcare organisations have a learning culture and processes to support continuous quality improvement.[38]
9. Control and choice
  • Consumers are involved in self-management of their health and any health conditions. This can involve having the knowledge, skills and confidence to manage one’s own health, and having a choice of healthcare provider.[39]
  • Patients have opportunities to be involved in health policy, and take shared responsibility for policy-making through meaningful and supported engagement in all levels and at all points of decision-making.[40]
10. Social, economic and community participation

Consumers receive healthcare that supports their social, economic and community participation – for example studying, training, working and/or taking part in community activities. [41]

Consumers have safe, secure housing; freedom from stigma and discrimination; and a sense of connection to culture. These enable and underpin participation and good health.[42]

11. Carers and support
  • Consumers are supported by family, friends or other carers.[43]
  • Carers, family and friends are supported to care for the patient.
  • Family, friends or other carers should be involved in decision-making and care planning in support of the patient. [44]

References

[33] Australian Commission on Safety and Quality in Healthcare (2008) Australian Charter of Healthcare Rights;  International Association of Patients Organizations (2006) Declaration on Patient-Centred Healthcare (IAPO: London)

[34] International Association of Patients Organizations (2006) Declaration on Patient-Centred Healthcare (IAPO: London); Picker Institute (2013) Principles of Patient-Centred Care; Coulter, Angela (2005) What do patients and the public want from primary care? (BMJ 2005, 331: 1199)

[35] Consumers Health Forum of Australia (2013) Why do I even need this test? An Informed Consent Resource for Consumers (CHF: Canberra)

[36] Australian Commission on Safety and Quality in Healthcare (2008) Australian Charter of Healthcare Rights; Picker Institute (2013) Principles of Patient-Centred Care

[37] Picker Institute (2013) Principles of Patient-Centred Car; Coulter, Angela (2005) What do patients and the public want from primary care? (BMJ 2005, 331: 1199)

[38] Australian Commission on Safety and Quality in Healthcare (2008) Australian Charter of Healthcare Rights

[39] Hibbard, Judith, Jean Stokard, Eldon Mahoney and Martin Tusler (2004) Development of the Patient Activation Measure (PAM): Conceptualising and Measuring Activation in Patients and Consumers (Health Services Research August 2004, 39(4 Pt1): 1005-1026); World Health Organisation (2001) WHO multi-country study on health and responsiveness 2000-2001 (WHO: Geneva) 

[40] International Association of Patients Organizations (2006) Declaration on Patient-Centred Healthcare (IAPO: London)

[41] International Association of Patients Organizations (2006) Declaration on Patient-Centred Healthcare (IAPO: London)

[42] Mental Health Council of Australia (2013) Measuring a Contributing Life, MHCA consultations on targets and indicators to drive mental health reform (MHCA: Canberra)

[43] Bowling, Ann (2005) Measuring Health, A review of quality of life measurement scales (McGraw-Hill Education, Berkshire) 

[44] Picker Institute (2013) Principles of Patient-Centred Care

How to apply the indicators of consumer-centred care

Keep these criteria in your mind as you read the consumer stories you have gathered, as you consider key experience points, and as you review Health Experience Wheels. You may like to read through a transcript and/or Experience Wheel keeping one or several of the criteria in mind. Frame the criteria as a statement or question to which you can reply with an answer, based on the experiences in the consumer narrative. 

Access, Equity and Affordability

Access: Did the storyteller experience any barriers to safe, timely, appropriate services that met their healthcare needs and/or managed their condition? Yes or No? If Yes, what barriers do they describe in their story? 

Equity: Did health services, professionals and the healthcare system recognise and address any dimensions of health inequality that are relevant to this story? Yes or No?

Affordability: Did the storyteller delay seeking treatment or care – or not seek them - because of cost? Did the storyteller experience anxiety or stress because of the cost of treatment or care? Yes or No?

Information and understanding

Was the storyteller provided with this information, and could they understand it? Yes or No? Did the storyteller describe lacking information? 

Informed consent and informed financial consent: Was the storyteller provided with the information and support they needed to give their informed consent? Did they give their informed financial consent? Yes or No?

Appropriate care

Did the storyteller receive the right care, at the right place, right time, and from the right professional? Yes or No?

Respectful care

Did the storyteller receive care that demonstrated respect for them, their culture, values, characteristics, preferences and expressed needs? Yes or No?

Whole of person care

Did care and treatment respond to the ‘whole person’? Does the storyteller describe unmet mental, emotional or physical care needs? Yes or No?

Coordinated care and supported transitions

Did health professionals and services work together to ensure any transitions in the storyteller’s care were smooth? Did the storyteller experience good coordination between services and health professionals? Yes or No?

Safe and high quality care and treatment

Does the story describe harm caused by care or treatment? Were any harms or risks associated with the storyteller’s care or treatment explained to them in a way they understood? If there was an adverse event, was this openly disclosed? If the storyteller made a complaint about their care, was there a clear process for making the complaint, and was there a response? Does the story describe a culture of openness and transparency around issues of safety and quality in care or treatment? Yes or No?

Control and choice

Did the healthcare experience provide the storyteller with a sense of control and choice over their life and health?  Yes or No?

Did the storyteller have opportunities to inform service delivery and policy? Yes or No?

Social, economic and community participation

Did health or healthcare impact on the storyteller’s ability to work, train or study; take part in social or community activities; or on their housing situation? Does the story describe an experience of stigma or discrimination? Yes or No? Does the storyteller suggest anything that could have improved their social, economic or community participation?

Carers and support

Does the storyteller describe any issues related to the support of family and friends? Were carers supported to care for the storyteller? Were family, friends or other carers involved in decision-making and care planning in support of the patient? Yes or No?

This will help you begin to map which criteria were issues for consumers. This is valuable evidence to inform your decision-making. 

Creating Health Experience Wheels with indicators of consumer-centred care: Step by Step

  1. Open the Real People, Real Data spreadsheet. (If you do not have a copy, CHF will be pleased to provide this to you. A copy is also available on the Templates page). 
  2. Once a Health Experience Wheel has been created and approved by the storyteller, assign one, some or all experience points with analysis criteria. 
  3. Use the Health Experience Wheel tool to automatically generate a Health Experience Wheel that also shows the relevant indicators of consumer centred-care. CHF can assist you with this process. 

Step One: Identify and record relevant indicators of consumer-centred care

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Sample Real People, Real Data spreadsheet
Sample Real People, Real Data spreadsheet

Step Two: Create Health Experience Wheel with Analysis Criteria

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Sample Health Experience Wheel
A sample of a Health Experience Wheel

The Real People, Real Data Tool-kit Templates

Template 1: Planning for Success: Questions to Consider

Template 2: Five Steps to Successful Storytelling

Template 3: Project Information for Potential Participants (Example)

Template 4: Voluntary and Informed Consent Form (Example)

Template 5: Interview Guide (Example)

Template 6: Blank Real People, Real Data spreadsheet.
Please note this must be saved as a .csv file to be uploaded as a wheel.

Additional information: Step by Step Guide for using the Health Experience Wheel

Health Experience Wheel online tool

The Health Experience Wheel online tool is available at https://expwheel.chf.org.au/ (The experience wheel login page is currently undergoing some changes - please ignore the contact details on the page as they are now out of date. If you have any questions regarding the wheel, please contact CHF on 02 6273 5444)

You can access a step by step guide to using The Health Experience Wheel online tool on the templates page at The Real People, Real Data Tool-kit Templates.