Writing to Patients from Rheumatology is a research project that aims to support rheumatology healthcare professionals to write outpatient clinic letters directly to patients.
Healthcare professionals, like doctors, nurses, physiotherapists and pharmacists, see people with rheumatology conditions in the outpatient clinic. Following the appointment, the healthcare professional will usually write a letter to summarise the clinic visit.
In the past, this letter would have been sent to the patient’s general practitioner (GP). A copy would also have been sent to the patient for their records. This approach could cause confusion for the patients as they might not have understood the complicated medical terminology included in this type of letter.
Many organisations who advise healthcare professionals on how best to communicate with patients now advise professionals to write clinic letters directly to the patients, with a copy sent to the patient’s GP. Although this approach has been encouraged for more than five years, it has yet to be widely adopted.
Our project aims to investigate and understand current patient and professional perspectives and practice on writing directly to patients. It will then work with patients and professionals to co-produce resources to support the rheumatology multi-disciplinary team to write directly to patients.
The study is funded by the British Society for Rheumatology, with support from Versus Arthritis. It is sponsored by The University of Manchester.
Project overview
The project has three phases, which will take place from June 2024 to August 2025.
Phase 1: Scoping
Surveys: To establish patients’ current understanding of rheumatology clinic letters and the terms used in these letters, and healthcare professionals’ current clinic letter writing practice.
Outputs: Knowledge of patients’ current understanding of rheumatology terminology and healthcare professionals’ current practice.
Phase 2: Exploring
Interviews and focus groups: To understand patients’ and healthcare professionals’ perspectives on clinic letters being written directly to patients, and preferences regarding the content and structure of such letters.
Outputs: Better understanding of patient and professional views on writing directly to patients.
Phase 3: Co-producing resources
Co-production workshops: To co-produce guidance and other resources to support healthcare professionals to write clinic letters directly to patients in a way that is understandable and acceptable to patients.
Outputs: Co-produced resources to support health care professionals to write directly to patients, including example letters, training resources and patient materials.
Take part
Patients and healthcare professionals can take part in the Writing to Patients from Rheumatology research project.
This might involve completing a survey or being interviewed about your experiences as a patient or healthcare professional.
Patient and public involvement
Patient involvement is an important part of the project.
Our lead patient partner, Karen Staniland, has worked with members of the project team for many years, and is experienced in supporting research projects. Karen is an equal member of the research project working group.
Our patient and public involvement and engagement group includes individuals with a range of characteristics to ensure engagement with a diversity of opinions. We have representatives from England, Scotland, Wales and Northern Ireland.
We meet every 1-2 months to discuss the project and get patients’ input into the study design, recruitment materials and processes, study questionnaires and interview guides, and the research findings. Members are paid for their time, in keeping with national guidance.
Testimonials
We will publish blog posts by healthcare professionals and patients talking about their experiences of writing and receiving letters about their care.
Read our first blog post by Dr Hugh Rayner about why he started writing directly to patients.
Research team
The Writing to Patients from Rheumatology project team comprises healthcare researchers and professionals, with involvement from our patient partners.
Outputs
View outputs from the Writing to Patients from Rheumatology project.
Royal College of Physicians webinar
Initial results from the surveys of patients and healthcare professionals were shared at a webinar hosted by the Royal College of Physicians (RCP). Dr Charlotte Sharp presented and discussed the results with fellow clinicians Dr Hugh Rayner and Dr Anne Kindelerer, and former BBC journalist, Rory Cellan-Jones.
- Watch the webinar here (link to external site)
Journal article – Editorial
In the article “Writing directly to patients, the time is now – but how?” Dr Charlotte Sharp and colleagues share information on the background to the project, and why it is important to write directly to patients.
- Read the editorial here (link to external site)
Conference presentation
Information about the project was presented via an oral (speaking) presentation to the Society for Academic Primary Care (SAPC) North Conference in December 2023.
Project poster
Information about the project was presented in a poster format to the North West Rheumatology Club in December 2023 by Dr Charlotte Sharp. Dr Sharp won first prize for best poster.
- View the poster (PDF)
Contact us
If you have any questions about this study, please contact a member of the project team.
Dr Charlotte Sharp
Email: charlotte.sharp@manchester.ac.uk
X (formerly Twitter): @sharpcharlotte
Dr Rebecca Goulding
Email: rebecca.goulding@manchester.ac.uk
X (formerly Twitter): @RGouldingUoM
Contact Us
+44 (0) 161 306 6000
