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Patients like UCB's Parkinson's Well-Being Map™

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    At UCB, we strive to improve the lives of people with severe diseases. In addition to developing and producing medicines, we are also committed to supporting patient communities in any way we can.

    In 2011, we launched the Parkinson’s Well-Being Map™, an innovative patient support tool that helps people with Parkinson’s to communicate their health status with their care teams. It was made available for free online and in paper form.

    The tool was developed in partnership with the European Parkinson’s Disease Association (EPDA), the Cure Parkinson’s Trust and the Spanish Federation of Parkinson’s Disease. It takes a holistic approach, allowing patients to track both motor and underlying symptoms.

    We recently conducted a European survey asking patients and health professionals what they think of the Well-Being Map™ and if there are any improvements we could make.

    Key findings:

    • The vast majority of patients (87%) found the tool helpful
    • 88% of those who can complete the Well-Being Map™ by themselves (3/4 of the cases) said it was easy to fill in
    • A large majority of patients said they were willing to promote the tool to their peers and share it within their communities
    • Doctors’ answers were generally consistent with the positive feedback received from patients.

    Of course, there is always room for improvement. Respondents to the survey suggested the Well-Being Map™ could be simplified, helping patients who find it difficult to complete the form by themselves.

    It was also suggested that doctors would benefit from more information on how to use the map in their daily practice. This would help them to feel more comfortable using the tool during consultations with patients.

    We will take these suggestions on board and explore how to adapt it further to the different countries specificities. The current version of the Well-Being Map™, launched in 2014, is the first update of  the original idea unveiled in 2011 as a result of feedback provided by patients and HCPs in some countries illustrating adaptability and evolution expected  to best serve patients’ needs. We are delighted that the vast majority of patients and health professionals find the map to be of value.

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