Exploring the expectations, needs and concerns of people with rheumatoid arthritis commencing methotrexate

Patient and Public Involvement and Engagement (PPIE) case study

Aim

We aimed to incorporate the perspectives of people with lived experience of rheumatoid arthritis (RA) in research aimed at developing recommendations for clinical practice.

Methods

We used online meetings and phone calls to interact with the 2 public contributors involved.

Involvement included

• Public contributors assisted at all stages of the research process including reviewing the purpose of the study and study design.​
• Interview topic guides were reviewed and amended including amendments to types of care delivery (i.e. telephone/video/in person), the importance of having a friend, relative or carer present at appointments.

Best practice

• Online meetings were beneficial to those who were feeling unwell due to the impact of RA​.
• Using PowerPoint presentations to support discussions was beneficial to the public contributors​.

Impact of PPIE

• Several aspects of the interview topic guides for the study were modified in light of PPIE input​.
• PPIE input ensured that the study reflected service user perspective and real-life experiences of rheumatology service provision​.
• They advised on the importance of researchers explaining they are experienced rheumatology nurses to improve trust and confidence.​
• PPIE partners informed infographic report disseminated to participants, publications and conference presentations​.

Download visual summary (PDF)