7. Recruiting patients

This stage involves identifying suitable patients to contact, and inviting them to participate. This process is extremely important, as patients’ involvement is an essential ingredient in ensuring successful change.

7 EBCD: Recruiting patients for experience-based co-design

The first step is to find one or more key staff members who will work with their colleagues to identify about 5-15 patients. The staff member should have an overview of the range of steps within the clinical pathway – for example, a clinical nurse specialist, a case manager or someone with a pathway coordination role. They will need to find individuals who have a story to tell and who are likely to identify both positive and negative experiences. If the patients offer only positive feedback, they will not be able to contribute to the key aim: to improve services (although positive experiences can provide useful insights too). They will also need to know whether the patient is well enough to participate and whether there are any clinical reasons why someone should not be invited to take part. Some patients may need a carer to accompany them.

Having identified the potential participants, the project facilitator or a staff member will phone the patients, explain the project, and draw up a list of those who are interested in taking part, before sending through follow-up information and consent forms (see  invitation to take part template and consent form for filming patients template). All participants must agree to being interviewed. Most are filmed, although this is optional. They will also be invited to join in the events and the co-design groups. Previous EBCD projects have found that about two-thirds of patient participants come to the events, and about half of those interviewed eventually become involved in the working groups. All patients should receive project updates at key stages throughout the project.

Services working with particularly vulnerable groups, such as people with mental health problems, may choose to draw on pre-existing groups or run groups for a period of several months or more before commencing the EBCD work in order to reassure patients and build trust. See Case study 1: Oxleas NHS Mental Health Trust.

Key points

  • Identify patients who have been through different aspects of the service, and who are beyond the critical point of their treatment, so that they can reflect on their experience.
  • Try to include a range of people – not only determined by age, gender and ethnicity, but also in terms of the treatment types and services experienced. Make sure participants’ experience of the service has been quite recent, so that the aspects of the service that they report are still current.
  • Be clear that the approach is not about focusing on negative experiences – it’s about working together to find solutions.
  • Offer travel expenses, refreshments and perhaps a small payment to thank the patient for their time and effort.
  • Try to avoid going to ‘the usual suspects’, as this is a valuable opportunity to gather some fresh thoughts. If you recruit patients involved in patient support groups, explain carefully that in this project they will need to focus on aspects of service delivery that could lead to improvements.
  • Do not worry about finding the ‘perfect patient sample’. This is a qualitative approach, focusing on the views of only a small number of people, so it is not intended to represent every detail about the service.
  • The project facilitator may need to assertively support the staff who are identifying patients, as this is not necessarily a task that reaches the top of the to-do list for busy clinical staff.
  • Begin recruitment early on, as it can take some time.
  • Other ways of recruiting patients include sending invitations to randomly selected patients, putting up posters and leaflets so that patients can find out about the project, or contacting local patient groups or voluntary agencies who might help you find people with relevant experience.
  • If patients within your service are unwell and find the interviews and subsequent participation too demanding, you may experience high drop-out rates during the project. You may need to recruit more participants later in the process. In some cases, carers have continued although the patient has dropped out.
  • If you are working with vulnerable people, think about how you will gather their feedback and whether you wish to adapt the standard EBCD approach. Some sites have chosen to anonymise interviews, or have used audio instead of video, or have provided feedback from a group rather than an individual, in order to ensure the safety of patients throughout the feedback process. However, in others (see Case study 1: Running EBCD in a mental health inpatient service) the experience of voicing their feedback was empowering for patients.

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8. Interviewing and filming patients