Patient Involvement in Service Development: An example from Belfast

A blog by Niamh Kennedy and Linsey McCall, Belfast Health and Social Care Trust

Two physiotherapists from the Belfast Trust Physiotherapy Department worked closely together to develop and deliver a personal and public involvement (PPI) project. Our goals were to enhance patient care, and to tailor the axial spondyloarthritis (AxSpA) service we provide to meet the needs of our patients. One physiotherapist was working on establishing a new inflammatory back pain pathway, while the other was involved in the inpatient axial spondyloarthritis (AxSpa) rehabilitation programme.

Our motivations were to understand what patients need from the physiotherapy service at various stages of their journey right from the point of diagnosis and onwards throughout the course of their condition. We sought patient feedback on several topics, including satisfaction levels with the diagnostic process, the best timing and methods to receive AxSpA information, preferred topics, the preferred method of physiotherapy service delivery and barriers to accessing physiotherapy.

How did you start the process of engaging patients?

We began by reaching out to the patient involvement team within our trust. Together, we designed a questionnaire in collaboration with consultants, other physiotherapists, and our managers. To ensure clarity and accessibility, we sent the questionnaire to a reader panel, who provided excellent suggestions for wording and format improvements.

We then circulated the questionnaire at clinics, created a QR code for online responses, and sent out letters to patients. Whenever possible, we spoke directly with patients to explain the purpose of this project.

What tactics did you use to engage your patients?

At every possible opportunity we emphasised to patients that their feedback was completely anonymous and optional but that it would be extremely valuable as it would help shape our service. To reach as many patients as possible, we used multiple methods: in-person paper questionnaires, QR codes, digital questionnaires and posted letters. We kept the format clear and simple and included a mix of open and closed questions, with multiple-choice options and plenty of room for comments. We ensured the language was accessible and used the NHS Health Literacy Toolkit  and guidance from the Plain English Campaign.

What barriers (if any) did you face while working on your project?

Developing the questionnaire was a time-consuming process, mainly because we asked many people for feedback and made numerous reviews and edits based on their suggestions. Despite the time taken, the effort proved to be immensely worthwhile. The final version of the questionnaire was significantly clearer and more concise than the original, ensuring that it effectively captured the necessary information while being easy for patients to understand.

We also felt some nervousness about potentially receiving and having to share negative feedback or comments. However, we understood that even unwelcome information was crucial for improving the service. Ultimately, we knew that addressing any concerns would be worth it to enhance patient care.

Were there any light bulb moments? Or big wins?

Using a QR code for online responses was very effective, as it allowed for automatic software processing of results, significantly speeding up the process. Consulting the Belfast Trust reader panel via the Patient Involvement Team was another major win; their suggestions provided valuable perspectives we hadn’t considered. Receiving positive comments from them was both encouraging and motivating for us. Having multiple external opinions was extremely helpful in highlighting areas that might not have been clear to our patients and identifying questions that needed clarification.

What was the result of your project? Is it still a work in progress or do you have outcomes you can share at this time?

The questionnaire was sent to 110 people, and we received 27 responses. The information gathered is now guiding service improvements. We have a clear understanding of what our patients want in terms of information and how they wish to access our service, as well as some of the barriers they face.

The results highlighted that effective communication is crucial. Getting good information about axial spondyloarthritis improved patient satisfaction. However, only 55% of people felt they could fully understand the information provided to them at the time of their diagnosis. This underscores the importance of ensuring that information is clear and accessible, especially during critical moments like receiving a diagnosis in a clinical setting.

It is evident from this project that a one-size-fits-all approach is unsuitable, and patient choice is important when determining the right type of treatment. People prefer receiving information in different ways, highlighting the importance of different learning styles. We also realised the need to ensure the wider Rheumatology team (MDT) makes patients aware of the physiotherapy service, as awareness of the role of physiotherapists for axial SpA was lower than expected. This highlighted the need for further education among our colleagues about the role of physiotherapy.

When asked in the questionnaire, several people have expressed an interest in participating in a follow on focus group to share their views in more detail. This will be our next step in the project.