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Patient stories

Patient stories can be an important component in understanding what has happened to a patient, in conjunction with their perceptions of the health care they have received. Patient stories are gathered by interviewing patients directly, face-to-face or by telephone, to gather their insights on the care they have received.

In PFCC, patient stories complement the shadowing process well. Patient stories can help clarify care experiences where there is not a dynamic pathway or a recognisable journey. They can also work well for particularly sensitive care experiences, such as end-of-life care, where it may not always be appropriate to shadow patients. They can also be used to capture the reflections of family members after the care experience, and can be collected at an appropriate time for the family.

The approach is familiar to health care organisations as most organisations already have in place a mechanism for gathering people’s stories, and boards tend to be familiar with the experience of hearing patients’ stories.

You can use patient stories to help you understand the patient journey – asking patients to talk you through what happened to them, where, when and with whom. Stories can also be used to explore how patients feel about what happens to them – the impact of particular care ‘touchpoints’ on them. The resulting stories can have a very powerful impact on staff.

Patient stories can also help the organisation understand how health care fits into the patients’ wider life – for example, what happens between episodes of care. This can help illustrate the implications of how things are done, such as the way clinics are organised, or of problems such as delays, poor communication, or the need to chase and follow up health care providers if care is not running smoothly.

Key points

  • Identify which sorts of patients you would like to hear from (for example, current or recent) and from where you will draw your sample (perhaps your own records, or from a local support group).
  • Think about how you will make contact – by phone or letter – thinking about when and where you would like to talk to the person.
  • Provide information about why you are collecting patient stories, and what will happen to those stories once they have been collected.
  • Ask for the person’s consent to record their story. You might do this by taking detailed notes or making an audio recording for later transcription.
  • Depending on the specifics of the care experience, write a loosely structured interview outline to guide the conversation through the care experience. Often a chronological approach works well, with opportunities to revisit significant parts of the process later in the conversation.
  • Be flexible enough to allow the patient to talk about the issues they want to talk about, and not be constrained by the interview outline.
  • After you have gathered the stories, analyse them in the same way as you do with shadowing evidence, to identify the key themes and generate ideas for improvement.
  • Be aware of safeguarding issues and share these with the interviewee. For example, it may not be possible to guarantee the person total anonymity if they raise an issue that you must act upon.
  • For each element of the patient’s journey you may find it helpful to prompt the person about:

–    how long it took
–    what information they received
–    finding their way around
–    what help they received, and whether they received the help they needed
–    whether their individual needs, for example, with language, mobility, culture or diet, were met
–    who was providing their care
–    whether services were responsive, for example, if they were in pain
–    how their family was involved
–    whether they were dealt with with politeness and kindness
–    whether their privacy was respected
–    what the environment was like
–    whether care was well co-ordinated
–    how they felt at each stage, what the impact was on them, and which elements had the most positive or negative impact.