Published: 16/09/2004, Volume II4, No. 5923 Page 21

Inviting patients to tell stories in their own words can reveal some uncomfortable truths, say John Bateson and Sheelagh Machin

Stories told honestly and truthfully touch us as human beings.

We come to understand the teller a little better, and their story can make us feel happy or angry, ashamed or proud - they make us reflect in a way that dislocated facts cannot.

By gathering narratives as told by patients and their families we can harness this power and change the way things happen in the NHS. Our teams can hear what it was really like as a patient travelling through our service, celebrate the good things and set about improving the bad.

The discovery interview process is the coronary heart disease collaborative's tool for gathering such narratives and using them to help concentrate improvement efforts. Stories gathered by trained interviewers are heard in full by a team of clinicians and nonclinicians. In this way the combined knowledge and expertise of the various listeners can add to the knowledge delivered by the story.

An example is a story told by a patient waiting for rehabilitation after a heart attack: 'The leaflet said someone would come out to see me and sort things out. I didn't see anybody for about three weeks, so I thought I would been forgotten'. Now There is a direct referral to the community rehabilitation nurse, a visit from the 'heart manual' facilitator when needed, and the patient is given the community nurse's telephone number.

Interviews are not like our daily conversations with patients, which rarely offer a picture of the overall experience. We try to let patients tell their own story and use only minimal prompts. We let them, not us, set the agenda.

The quality of the information we are trying to gather depends very much on the skill of the interviewer. In our model each interviewer has had prior experience and must attend an orientation session.

Using trained interviewers and full transcriptions makes it clear that this is a serious undertaking, but it remains an unusual method for gathering data. Most professionals need reassurance that a method without a large exhaustive dataset is valuable.

The types of change that result from the process vary in size and complexity:

lA patient was confused because an information leaflet had the wrong hospital name printed on it. This is a real problem, but the solution is obvious, so we just sort it out.

lA patient's story reveals that he was made very anxious when moved from a cardiac care unit to a normal ward environment.

Here there are many things we could do, such as create a stepdown area within the cardiac unit, or simply improve the information giving before the move. The team must come up with options and test them using other techniques. In this case the solution is not obvious - but the story has raised a problem.

lRehabilitation was not offered, claims a patient, but the team feel this is unlikely. But it is an important issue and the answer can be best found by gathering information from other sources (via referral letters or a survey of non-attendees).

John Bateson is former programme director of the north-east London CHD collaborative and Sheelagh Machin is associate director of the national CHD collaborative.

www. modern. nhs. uk/chd (documents for sharing).