7. Recruiting patients
This stage involves identifying suitable patients to contact, and inviting them to participate. This process is extremely important, as patient involvement is an essential ingredient in ensuring successful change.
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 if the patient is well enough to participate and if there are any clinical reasons why someone should not be invited to take part.
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 of 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. We found that about two-thirds of our patient participants came to the events. About half of those interviewed eventually became involved in the working groups. All patients should receive project updates at key stages throughout the project.
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.
- 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 likely to be unwell, you may experience high drop-out rates during the project, as the interviews and subsequent participation may be too demanding. You may need to recruit more participants later in the process.