11. Running the patient feedback event

This event marks the point at which patient participants come together for the first time. They watch the edited film and discuss what they think are the key priorities for service improvement.

11 EBCD: Running a patient feedback event in experience-based co-design

The patient feedback event is a facilitated meeting that invites patients who have already been interviewed as part of the project to develop their collective feedback about the service. (See invitation to take part template). Bringing the patients together as a group builds their confidence about speaking in a meeting environment before they meet with the staff, and helps them see that they are not just speaking for themselves but for a wider group of patients. The project facilitator introduces the event and explains the project as a whole, setting out the agenda for the day. (See patient feedback event agenda template).

After the patient film is shown, the facilitator gently encourages the patients to talk about their response to the footage and then runs an emotional mapping exercise to help participants highlight key points of the patient journey that they feel could have been managed better. This involves encouraging participants to place sticky notes on a timeline to highlight the touchpoints – emotionally charged or key moments – along their journey (use the guide to facilitating the emotional mapping exercise). By the end of the exercise, the group will have created a visual representation of their journey, with sticky notes highlighting particularly positive points or those that might benefit from improvement. For example, an emotional map depicting ‘having day surgery’ may start with ‘leaving home’ and continue through ‘arriving at the service’, ‘being separated from friends and family’, ‘waiting for the operation’ and ‘arriving home’, with many further stages in between.

The feedback is then narrowed down to a shortlist of potential areas for service improvement. These will be raised at the joint patient–staff event. If you have time at the end, ask patients in small groups to use the design template to start thinking about what the ideal solutions might look like. (See design template).

Key points

  • Give patients plenty of notice about the event. Some sites have identified the ideal amount of notice for patients as two weeks: any less might mean that fewer people are able to attend – but any more can also lead to reduced attendance, as other plans take precedence. Some also phoned people the day before to remind them.
  • Many patients are apprehensive about this event, so it is important that they are welcomed by a familiar face and are invited to bring a friend, family member or carer for support if they wish. A relaxed environment, with food and refreshments, is critical. The whole event needs to be very relaxed, with an atmosphere of trust, respect and acknowledgement of the privilege of hearing people’s stories.
  • Everyone who was interviewed should be invited to the event. Not all will attend, but you need at least four or five participants to get a sense of collective feedback. You may include people who have not been interviewed, to ensure that you have enough people.
  • If you have carried out the accelerated version, this event may be the first time you have met the patients. In this case, it may be worth adding in some additional time for patients to get to know each other, get to know you and vice versa. This is crucial if patients are to share their experiences and helps them become a unified group before meeting staff at the next event.
  • Choose a convenient venue where people feel comfortable. If there is a suitable room within the service, with a big enough wall for the emotional mapping exercise, this may feel more relaxed than a smart conference venue. However, for some patient groups a neutral venue is essential. Wherever you choose, the key is to create a warm, welcoming environment that is easily accessible for the participants.
  • Set clear ground rules and emphasise that noone is required or expected to share personal experiences if they do not want to in the group environment. 
  • The structured nature of the event can help patients distance themselves from distressing personal experiences, by shifting their focus from their personal experience to finding practical solutions.
  • Make sure you have contact details to hand in case patients have questions about aspects of their clinical care or need to access psychological services as a result of participating in the project. Members of the clinical services team are not present at the event as it is for patients only, to encourage them to comfortably discuss their honest thoughts about the service between themselves.
  • Some participants will be nervous about talking in groups. Use an icebreaker that encourages everyone – including the facilitator – to share information with the group. (For examples of icebreakers, see the Mind Tools website). Manage dominant group members with care. For example, if someone is dominating the discussion, take them to one side at a break and gently ask them to help ensure that other quieter members of the group have a chance to contribute.
  • The event requires coordination in three areas – logistics, such as refreshments and timekeeping; ensuring that the day’s aims are met; and supporting the participants. If possible put in place several different facilitators with clear areas of focus and responsibility.
  • Remember that some patient participants might not be able to read or write. The most important thing is that their voices are heard, so use creative approaches to sharing information and ideas, such as asking facilitators to read things out and write down what participants are saying.
  • To gather the themes highlighted by patients, you could use a voting system such as giving patients scorecards on which to jot down points that they agree with. Alternatively, you could make the decision informally, by group consensus.
  • Again, provide patient participants with travel expenses and a contribution for their time. And find out how the event went by asking participants for feedback. (See sample patient feedback form).

Read the next section

12. Running the joint patient-staff event