Dr. Harriet Teare
Title of Presentation
The Rudy Study: Using Digital Technologies to Enable a Patient Partnership
Date and Place
Dr Harriet Teare’s research interests relate to the role of participants in medical research, and improving governance infrastructure to support communication and interactive engagement. She contributes to a number of specific research projects, including providing research governance and ethical support to the DIRECT project – an IMI-JU funded collaboration exploring stratification in Type 2 diabetes, the Rudy project – a research network for rare diseases of the blood, bone and joints, and leads a work package focusing on consent in the Genetics Clinic of the Future – a Horizon 2020 project mapping the complex challenges that will need to be tackled to introduce genome sequencing more widely into the clinic. Harriet obtained a DPhil in Chemistry from Merton College, University of Oxford, and previously worked as a senior policy advisor at Cancer Research UK, focusing on policy issues relating to science and research, and public health.
Patients provide important expertise and experience of disease that can enhance the design and execution of research leading to significant innovations in the research process. Digital technologies are presenting the means to do this more easily, to engage patients and involve them in the design and execution of research. The Rudy Study is one such example, where patients can contribute information over time to a rare diseases clinical research network using a custom-developed electronic platform.
The Rudy platform allows a dynamic consent approach, with participants able to alter their consent options online at any time. Data is collected via the secure website, providing patients with a timeline of significant clinical events and six monthly validated questionnaires addressing quality of life, pain, sleep, function, fatigue and mood. To date, 438 participants with rare musculoskeletal conditions have been recruited, and baseline questionnaire completion is in excess of 50% for all conditions.
Participant involvement has been essential, with substantial changes to study design resulting from participant suggestions via the RUDY patient forum.
We will present our experiences from the first year of the Rudy Study, and discuss how the electronic engagement tools, including dynamic consent, have influenced the success of the project, and the future developments that have been suggested by the Rudy participants, which will greatly influence the development of this study.
Acknowledgements: The RUDY study was funded by the UK National Institute of Health Research (NIHR) Rare Diseases Translational Research Collaboration in Musculoskeletal Diseases and the Oxford NIHR Musculoskeletal Biomedical Research Unit.