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Emotions matter - let’s listen

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    What do patients with severe chronic diseases want most from those aiming to address their unmet needs? The answer, according to a new study, is more emotional support.


    As we discussed in a recent story, we need to break down the silos between healthcare actors to define, measure and maximize patient value: clinicians, payers, companies and patients often value different things.

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    If we are to create a patient-centered healthcare system, the voice of patients must be centre stage. That is why a new paper published in the NEJM Catalyst journal is so important. The study, by UCB, ARTIS Ventures and Quid, shows that 75% of patient’s unmet needs related to emotional rather than medical issues.

    It is a startling finding from a groundbreaking research collaboration. A team of researchers used natural language processing and machine learning to analyze over half a million patient comments on patient discussion forums. The result is the first and largest study of its kind to use artificial intelligence (AI) to identify unmet needs among patients with chronic conditions.

    People, not patients – rethinking the approach
    People living with ten severe chronic diseases, including Alzheimer’s, diabetes, Crohn’s disease, rheumatoid arthritis, psoriasis, psoriatic arthritis, breast cancer, osteoporosis, Parkinson’s disease, and epilepsy, were included in the study. More than 500,000 posts made between 2010 and 2018 were examined to gain insights into how healthcare stakeholders – including physicians, policymakers and industry – can do more to improve the lives of patients.

    Six of the top eight issues consistently raised by patients related not to clinical symptoms but to quality of life issues, including the long-term emotional challenges that arise when adapting to chronic illnesses. Patients worry about how their daily life may deteriorate, how they will cope mentally with physical limitations, and how they might better manage their disease in the longer term.

    The research found that the urgency of these emotional needs tended to grow over time: patients living with severe chronic illnesses became increasingly distressed by the limitations of their condition and the failure of the healthcare system to address them.

    Building understanding, improving lives
    Physicians, advocacy groups and other healthcare stakeholders have opportunities, and responsibilities, to address these emotional needs through greater awareness and education. The analysis shows patients want to understand their disease at a deeper level, both theoretically and practically.

    While the internet has made it easy to collect information, patients lack the medical training to truly understand their condition. It is not enough to only inform them of steps to manage their illness, such as with a medication schedule, but instead take the time to explain the reasoning and science behind each medical step.
     
    The root of many of these unmet emotional needs stem from uncertainty and confusion, which leads to anxiety and distrust. If healthcare stakeholders heed the very clear results of this study, we can all work together to provide people with severe chronic conditions a better quality of life.
     
    This landmark paper helps us to see our work through the patient lens; it helps us to better appreciate patients’ perspectives and supports our call for stakeholders to break down the silos and work together to deliver innovation that patients value.

    We will make patients’ priorities our priorities. At UCB, we are listening.

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