Professor Simon Noble, Director of the Division of Population Medicine, and renowned expert in the field of cancer associated thrombosis research, shares a compelling case study that exemplifies the pivotal role of Patient and Public Involvement (PPI) in shaping and enhancing research outcomes.
Engaging patients in research question formulation
An initial study ‘HIDDEN’ aimed to investigate the prevalence of deep vein thrombosis in patients admitted to hospices, addressing a critical gap in risk assessment and preventive measures for this vulnerable population.
The study’s initiation involved collaboration with Wales Cancer Research Centre (WCRC) PPI Research Partner Kathy Seddon, an expert associated with Marie Curie voices, who played a key role in evaluating and shaping the research according to national PPI standards. Unlike traditional approaches where patients are added to grants as an afterthought, this study prioritised involving patients from the very beginning. Kathy Seddon continued as a genuine co-applicant throughout the project, challenging the tokenistic inclusion of patients in research.
Reframing perspectives and improving recruitment
During the follow up study, HIDDEN 2, a critical turning point occurred when issues related to patient recruitment for scans were identified. The research team faced challenges at one site where eligible patients were not approached due to concerns about distressing them. We sought the input of our PPI partners, who challenged this perception, highlighting the importance of allowing patients the autonomy to decide their participation. The research team described the PPI perspective as profound, providing them insight they would never have otherwise gained. The subsequent month witnessed a threefold increase in recruitment, demonstrating the transformative impact of genuine patient engagement.
Applying lessons to a Horizon 2020 study
Building on the success of the HIDDEN study, our team secured a €6m Horizon Europe Research and Innovations 2020 grant for the SERENITY study, involving 8 countries and 14 institutions across Europe. The SERENITY study focuses on the use of Antithrombotic Therapy (ATT) in end-of-life care and hopes to help to change the decision- making processes involved with the issuing of medication. This study uses various research methods to evaluate the use of ATT in patients and will develop an easily accessible web-based shared decision-making tool to optimise its use at the end of life. It is hoped that this will then lead to enhanced empowerment, improved quality of life and treatment satisfaction of people with advanced cancer and their care givers.
WCRC funded Research Fellow Dr Michelle Edwards has taken on the role of overall work package coordinator, ensuring continuous PPI overlap across the study’s six work packages. Dr Kathy Seddon leads on PPI input to the study.
Recognising the varying levels of PPI understanding among European institutions, the team has invested in internal resources to coordinate PPI efforts. This has included the use of the Public Involvement in Research Impact Toolkit (PIRIT). PIRIT was developed by a group of Research Partners including Kathy Seddon and launched as a result of a collaboration between the WCRC and Marie Curie Research Centre (MCRC). The free Toolkit aims to help researchers working with the public to plan meaningful involvement in research alongside helping to track and demonstrate the difference it makes.
Addressing funding challenges for early PPI involvement
This case study highlights a critical challenge in current research funding structures – the lack of funds for PPI at the inception stage. I argue for a paradigm shift, advocating for early funding to initiate PPI activities, acknowledging the time, effort, and expertise contributed by patient representatives. The Division of Population Medicine at Cardiff University has recently taken proactive steps to tackle this by allocating divisional funds to cover the initial costs of PPI involvement.
This case study underscores the transformative impact of authentic PPI in cancer related thrombosis research. From shaping research questions to reframing recruitment strategies and securing a Horizon grant, this study serves as a compelling example of how meaningful patient engagement can enhance the quality and impact of medical research. Moreover, it calls for a re-evaluation of funding structures to ensure that PPI is integrated into the earliest stages of study development, reflecting a commitment to ethical and inclusive research practices.