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What do patients want?

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    The days of patients nodding silently as they passively receive information from their doctor are gone.

    Modern patients are informed, connected and curious. They read about their conditions online, they engage with other patients and they expect a more dynamic interaction with health services.

    To better understand what today's patients value, UCB Iberia convened an online meeting of patients to ask them about their needs. Around 200 people took part from Spain, Portugal, Belgium, Greece, Germany, Switzerland, México, Uruguay, Argentina, Guatemala, Costa Rica, Ecuador, Peru, Colombia and Brazil.

    The session was moderated by former professional basketball player Fernando Romay, married to Leticia, living with RA and discussions were led by 3 patients living with different immunological diseases.

    The first theme to be explored was doctor-patient communication. Patients said they want greater mutual understanding. 41% said they would like improved closeness and empathy from their health professionals, and several participants called for more time with their doctor.

    Patients can play an active role in creating this environment themselves, according to one contributor. For example, writing your concerns on a piece of paper can help to ensure that nothing is left unsaid during a consultation.

    Health professionals are often under time pressure, it was noted, so both sides must take responsibility for getting maximum value from every interaction.

    Participants said they would also like to see better comprehension of chronic diseases, not just by society in general but also from their own families and caregivers.

    The conversation then moved to a discussion on e-Health. Almost 60% of patients said they consulted the internet after discovering symptoms or receiving a diagnosis. However, the quality of online information remains an issue: 96% said they would like their doctor to recommend trustworthy websites and any other new communication channel.

    All participants agreed that patient associations have a valuable role to play. They can give advice, connect you with other people in the same situation, and support you in dealing with diagnosis, said a patient.

    Empowered and informed patients will play a valuable role in managing chronic diseases in the years to come. The role of 'patient experts' is expected to grow, with patient associations and the medical profession training patients to become disease advocates.

    Peer support can help answer many of the practical questions that newly-diagnosed patients have.

    The interactive meeting was a great success with 93% of participants saying they would like to take part again.

    This online patient discussion demonstrates UCB's willingness to listen and to give patients a platform to engage with experts and with one another.

    For us, we are happy to explore innovative initiatives that enhance patients' quality of life. Understanding what patients want from healthcare will help us to meet their needs.

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