12 October 2024
In celebration of World Arthritis Day, the British Society for Rheumatology is proud to launch an innovative resource aimed at transforming how follow-up care is managed for patients with rheumatic conditions. The Patient initiated follow-up (PIFU) Toolkit, co-created by leading experts, clinicians, and patients, empowers individuals to take control of their care by enabling them to schedule follow-up appointments based on their needs, rather than rigid clinical schedules. This approach reduces unnecessary hospital visits while ensuring timely and personalised care for those who need it most.
Why the PIFU Toolkit was created
The PIFU initiative is a response to the evolving needs of both patients and the NHS. Since the reconfiguration of UK outpatient services in 2020, there has been a push to adopt PIFU across various specialities, including rheumatology. However, poorly implemented PIFU services can unintentionally cause harm to both patients and NHS staff. As Laura Coates, Associate Professor at Oxford University and one of the key figures behind this project, explains:
"PIFU is a complex and nuanced intervention. When it works, it’s brilliant. But when it doesn’t, it can be challenging."
Prof. Coates recognised the need for a more standardised and informed approach to implementing PIFU, particularly in rheumatology, where patients typically require lifelong care.
“Many patients, especially those from vulnerable populations, struggle to understand their conditions and navigate the healthcare system. This can lead to missed opportunities for care and worsened outcomes.”
The toolkit aims to bridge this gap by providing high-quality, practical materials that cater to both healthcare professionals and patients.
How the PIFU Toolkit can be used
The PIFU Toolkit is designed to be a comprehensive resource for clinicians and patients, providing essential tools that make it easier to implement PIFU effectively. Among the resources available are:
- A PIFU handbook for clinicians
- Patient-friendly FAQs
- Infographics and leaflets that explain the process in simple terms
- Videos with both English and translated subtitles
- Practical templates for personalising the approach to fit individual services
The toolkit is not only accessible and free to download, but it is also fully customisable for different NHS services, allowing local hospitals to co-brand and adapt the materials to their specific needs.
Why it’s important for rheumatology
For patients with chronic rheumatic diseases, PIFU represents a significant shift in how care is managed. Rheumatology services are predominantly delivered in outpatient settings, and traditional models often result in fixed appointments, even when they may not be necessary. With PIFU, patients now have the flexibility to arrange follow-ups based on their symptoms and circumstances, aligning care with their personal needs.
As Prof. Coates highlights:
"Shared decision-making is critical to a successful PIFU service. With the right educational materials, patients can make informed decisions about their care, leading to better outcomes and more efficient use of healthcare resources."
By supporting patients in making these decisions, the PIFU Toolkit helps establish a foundation of trust between healthcare providers and patients. This relationship is crucial for improving both satisfaction and outcomes over time.
A milestone in rheumatology care
This toolkit is a result of extensive collaboration between clinicians, researchers, and patients. The research was funded by the British Society for Rheumatology advanced research funding call and was co-produced with input from patients and patient advocacy groups like NRAS and NASS.
Prof. Coates reflects on the impact of this support:
“The BSR advanced research funding has been instrumental in advancing our work on the PIFU toolkit. It allowed us to coordinate a wide range of expertise, from animation and graphic production to patient and clinician collaboration, creating accessible resources that will improve PIFU care across the NHS. Personally, this funding was pivotal in getting our research off the ground while applying for additional support from NIHR. It has not only helped us prepare for the upcoming TaILOR trial, which will test how well PIFU works for people with inflammatory arthritis, but has also supported my own professional growth as we explore the effectiveness of PIFU in rheumatology on a national scale."
Launching on World Arthritis Day: Informed choices, better outcomes
The launch of the PIFU Toolkit coincides with World Arthritis Day, the theme of which this year is “informed choices, better outcomes.” This toolkit supports this by providing patients with the information and tools they need to make empowered decisions about their care.
As we mark World Arthritis Day, there is no better time to reflect on the importance of informed, patient-centred care. With the PIFU Toolkit, we are taking a significant step forward in helping patients with arthritis and other rheumatic conditions achieve better outcomes.
You can hear more about Prof. Coates’ research and journey to develop this toolkit by listening to our podcast, Talking Rheumatology – Exploring PIFU.
Access the new PIFU toolkit here.