The World Health Organization estimates that by 2020, 57% of the world’s population will be dealing with at least one chronic disease. Best care for these patients will require a more comprehensive approach beyond the occasional visit to their physicians. Given the increasingly overburdened healthcare systems, the question is how we can systematically deliver this best care and hence maximum patient value.
Let’s start by clarifying that this is a hard, as-of-yet unsolved problem. That being said, I think that the beginning of the answer is simple: Leverage better tools to listen and understand what our patients are really telling us. With the rise in artificial intelligence and online patient communities, we can finally start to hear them both as individuals and as a collective whole and begin to answer their needs.
Earlier this year, we* published in NEJM Catalyst an analysis of more than half a million anonymous online chronic patient comments using Quid, an AI tool. For the first time, we were able to algorithmically understand the shared voice of more than 500,000 patient and caregiver comments across 10 different chronic diseases over the past 10 years. As we listened to their stories, we came to realize that the majority sought better support for the emotional and long-term challenges of living with their diseases, rather than pure medical issues.
Top Unmet Needs
Indeed, six of the top eight unmet needs were more emotional than medical. These included asking for advice on how to cope with the impact of side effects on daily life, connecting with other patients to share, managing expectations, and understanding how their disease will progress.
The same research showed that patients struggled with six pain points in physician interactions, all rooted in uncertainty and confusion: Lack of communication, lack of definitive answers, discomfort with the doctor, distrust of the medical system, choosing the right doctor, and unexplained tests and treatments.
All together, our research suggests that chronic patients need even more support in navigating how to live their lives with their illnesses, in addition to better and more effective medical treatments. Clearly, caring for our patients comprehensively means addressing not only medical, but also their emotional and social needs.
*Unmet Needs: Hearing the Challenges of Chronic Patients with Artificial Intelligence by Bharat Tewarie, Vasudev Bailey, and Jennings Xu, https://catalyst.nejm.org/doi/full/10.1056/CAT.19.0018: January 30th 2019