Carole Scrafton

Patient & Health Advocate - FibroFlutters

Carole has established FibroFlutters Patient Advocacy Organisation for chronic / rare illnesses, a patient-driven and focused patient advocacy organisation that is for everyone #notjustpatients. She is a patient with chronic illness and a genetic rare disease


Connecting different stakeholders from across the industry and helping to develop, nurture and advocate for multidisciplinary / multi-stakeholder approaches to all aspects of medical healthcare so that chronic illness & rare disease patients can receive the type of care and treatments that they need.  Supporting disease education and awareness through better medical and health communications.


Carole campaigns and advocates at many levels including patient forums, as well as taking part in many global conferences, in person or via the internet. She encourages more efficient patient engagement practises with a view to the better development of therapies and treatments within the pharma, medical, and clinical environments.

Carole Scrafton


  • Wednesday - September 21, 2022 - 14:15

    Panel discussion: Effective patient recruitment and retention in clinical trials to boost trial success

    • What will persuade and impact the patient?
    • Is there anything pharma can provide for a trial member that will increase the value of participation?
    • The aim of patient-driven clinical trials is to diminish the burden of participation by making the participant journey as convenient and pleasant as possible
    • Utilize fitting procedures and techniques to limit dropouts without, in any capacity, constraining a patient to remain in the study
    • Utilize wider use of the innovative statistical and Machine Learning techniques to provide more accurate data-driven forecasting and centralized monitoring of patient recruitment

  • Wednesday - September 21, 2022 - 17:05

    What are the benefits of using multi stakeholder approaches, in research, from the patient perspective

    • Why are multi-stakeholder approaches needed and important?
    • Leveraging collaboration to address patients’ needs and challenges
    • The impact of multi-stakeholder approaches on reducing patient burden
    • Patient experience and perspective taking part in multi-stakeholder initiatives


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