Health Service Co-Design


Patient stories

Patient stories are an opportunity for patients to talk about their experiences, either individually or in a group setting.

Why use it

The purpose of patient stories is to explore and understand patient experiences of their condition and of health services over time. Patient stories can help other patients make sense of their experiences and help services understand how these might be improved.

One or more stories can be used as reference case studies or evolved into patient journey mapping or scenarios and personas to help guide your improvement work.

When to use it

Patient stories are best gathered early on in your co-design work to help you identify and develop improvements. They can also be useful when you are designing changes, e.g., during prototyping or monitoring the effects of improvements, e.g., when using the biggest difference tool.

Deciding your approach

There are two main ways of getting patient stories: individual interviews and group sessions.

1. Interviewing individual patients with their families/whanau and other supporters:

Such interviews provide considerable detail about the patient experience of both their condition and the service. They are useful for exploring subtle nuances, though identifying these can depend on a researcher?s familiarity with general or expected experiences.

2. Talking to patients (with similar conditions or service experiences) in groups:

Patients typically have few opportunities to 'share and compare' experiences with other patients in any detail, so group discussions can help explore common experiences. Group discussions are also useful for brainstorming improvements that can make a big difference to patient experiences.

Patient stories can be analysed in a number of ways, depending on the scope of your project and your own approach to service improvement:

  • The structure of the story. Typically the story is organised around the phases of their condition and/or the service steps they went through, with emotional highs and lows interwoven with these
  • The content of the story, for example, the experiences they went through, with attention to the nature and intensity of different experiences over time
  • The language patients use. For example,   the ideas they use to make sense of their experiences and their own responses
  • The service elements or incidents that had a particular impact. These may be communications, attitudes, behaviours and/or people.

Note: Even a single patient story about a negative experience can be useful in developing improvements. What matters is that the cause of the experience is explored and the chances of a repeat experience reduced. Specific aspects of stories (such as critical events and feelings) can also be quantified using experience-based surveys.

1. Make sure patients are physically comfortable and at ease

For interviews, it often helps to conduct sessions in patients' homes where they can feel free to be themselves and fully express their experiences fully.

Be prepared for moments of deep emotion for patients as they tell the story and re-live particular moments, or discover things they had not noticed previously, or re-experience feelings they thought were past. It can be important to have family and friends as part of the interview to provide support, as well as ready access to formal support services. Be prepared for patients who are emotionally very strong as well - most grow in some way through their experiences.

As a researcher, it is also important to be prepared for intense emotions, and to be able to articulate these in full empathetic support of the patient. It is common to recall one's own experiences as well, and it is important to hold these carefully during the interview. A calm, quiet, deeply empathetic manner is completely appropriate'

Don't set a time limit on the story. Give patients the time to tell things their way.

2. Briefly explain the purpose and format of the interview/discussion

Before you begin:

Make sure patients understand and have given their consent to participate.

Emphasise that the session is unstructured and designed to give them free reign to talk about their experiences.

There are usually three different aspects to a storytelling session:
  • Patients telling their story and talking about their experiences.
  • Patients reflecting on what their experiences meant for them.
  • Patients reflecting on what their experiences suggest about services and how they can be improved.

These are typically intertwined in the telling, and it is better to let people manage the session in their own way.

3. Encourage patients to tell their own stories on their own terms and at their own pace

Start by asking open-ended questions. "How did things start for you?" "When did you first notice anything unusual?"

Continue to use open-ended questions such as "What happened next?" and "What was going on for you at that time?" until they have reached the end of their story.

In group discussions, it can be useful to ask people to tell their stories in groups of two or three to develop shared stories. They may then summarise and write these down as three to five 'chapters' (describing the major phases) with key experiences summarised under each.

4. Invite patients to reflect on their own experiences

Start by asking open-ended general questions, for example, "Overall, what do you make of your experiences?" before moving into specific examples.

Continue to use open-ended questions, such as, "What specific experiences stand out for you as particularly good or bad?", "What did you make of X experience?", "How did you deal with X experience?" and "What did X experience suggest to you about the service?" until they have reflected as much as they want.

Patients may have reflected on their experiences already, so encourage a deeper exploration while avoiding repetition at this time.

One way to encourage deeper reflection is to offer comments other patients have made and invite discussion from their own experience.

Be transparent when doing this to avoid misleading patients who might assume these are your own or your organisation's.

In group discussions, it can be useful to summarise their reflections on specific experiences under the relevant phases.

5. Invite patients to suggest improvements

Focus on things that would have made all the difference to patients? own specific experiences. Start with an open question, for example, "What could have been different for you?" or "What changes in servcie would make a difference for you?".

Remind patients of any ideas they have already mentioned.

Include any ideas you want to check at this stage.

When the ideas have all been covered summarise by asking, "If all these things were done what difference would that have made for you?".

6. Paraphrase patient experiences, their reflections and their suggestions

Check you have understood correctly and that you aren't missing anything out. Invite them to comment on, or add anything, to what you have paraphrased.

7. Give a simple, concise outline of the next few steps in the project including when and how any improvements will be made

Patients will want to know they are making a tangible difference to service quality and to the experiences of future patients. You may also need to share contact details so you can review any details of their experience and/or provide patients with a summary of the research, and so they can follow-up with you at any time.

Story guide for interviews


  • Make sure the session is focused on patients and their experiences. Minimise any need to ask structured questions and to cover topics of little or no relevance to them.
  • Patients may often hold values that are not relevant to their service experiences, but respect their views nonetheless. Don't debate the correctness of their views in any way. If the patient has extreme views of the service, accept these. If the patient?s experience includes a significant misunderstanding, carefully suggest this and explore what difference this information make for them.
  • Make an offer to provide more accurate information. If the patient is abusive of service staff in any way, try to understand the cause (such as the specific behaviour) without agreeing or disagreeing with their view.
  • If patient experiences include any examples of unethical service or staff behaviour, or unresolved problems, carefully point this out (they may not realise this) and offer to help the patient address these. Be proactive and don't use the research as a barrier to improving patient outcomes. Make sure you fulfil any commitments to act on their behalf.

Example: Colorectal cancer patient stories

The Colorectal Service at Waitemata DHB conducted patient story interviews with 10 diverse (by age, gender, ethnicity and condition) patients of the service.

Interviews ranged from about forty minutes to two hours. These were conducted at a time and place that suited the patients (mostly in their homes) and two interviewers (a researcher and a project team member) attended the interviews.

The interviews identified a range of issues and improvements, but most of all they highlighted the importance of spoken and written communication with patients. A follow-up survey of patients (based on a shortened version of the NHS service quality survey) helped quantify the size of these issues and set targets for subsequent improvement activities.