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Patients train doctors to improve diagnosis

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    Health professionals are given a huge breadth of knowledge during their professional training but for many conditions, real-life insights from people living with severe diseases provide a more complete understanding of their day-to-day concerns.

    For chronic diseases, such as rheumatoid arthritis (RA) and ankylosing spondylitis (AS), diagnosis – and effective treatment – often come late, sometimes taking up to a decade. Delayed diagnosis can translate into poorer outcomes and reduced quality of life.

    The Patient Partners Programme gives trainee doctors, GPs, nurses and other healthcare professionals an opportunity to learn directly from patients about their symptoms and the impact of the disease on their daily lives but more importantly, they learn how to conduct the anamnesis and clinical exam in a more patient-focused way.

    This initiative first trains patients so they become, in turn, professional healthcare trainers. With the support of a consultant rheumatologist, these ‘expert patients’ are teaching the next generation of GPs to be aware of RA and AS; to ask patients the right questions; and to have the right mindset to recognise these conditions at the earliest opportunity.

    By emphasizing earlier diagnosis of RA and AS patients, the Patient Partners initiative advocates initiation of treatment during the early window of opportunity of these diseases. This is definitely beneficial for the patient, both in the short and in the long run.

    In practice, the training sessions give participants a chance to interact with patients, examine them and hear their personal stories. Since patients often say that emotional aspects of severe and chronic diseases are neglected, this curriculum specifically includes a module on emotional intelligence.

    This ground-breaking approach was originally devised by a doctor and patient in Texas and made its way across the Atlantic in 1995 when a Swedish-based initiative was launched. In Belgium, the programme began in 1999 and is a not-for-profit organisation run by Professor René Westhovens in cooperation with the Royal Belgian Society for Rheumatology.

    UCB has been supportive of the project for a few years and has recently incorporated the training session into a leadership programme for its own business leaders.

    Thirty UCB employees had the opportunity to interact with patients through this initiative. They learned about the challenges of living with RA and AS, the frustration patients can feel while waiting years for the right diagnosis, and how severe diseases can – if not well managed – stand in the way of embracing work and study opportunities.

    It was an opportunity to understand these conditions and the people who live with them every day, as well as gaining a deeper appreciation of the value of early diagnosis, early intervention and improved outcomes.

    Looking ahead, UCB’s commitment to partner with external stakeholders will allow us to investigate future collaboration opportunities. For example, the topic on family planning and pregnancy for people with severe diseases – an issue close to UCB’s heart and a deliverable of our collaboration with Patient Partners - will be added to the future training curriculum. This collaboration will also provide a valuable source of contributors to UCB patient panels.

    As this partnership is a win-win for both partners, we look forward to seeing the programme gain even more impact in the years to come.

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