“I wish I had been told that medications were only 30-50 percent effective before I started in 2010. I also wish I’d heard about possible negative side effects instead of being told it was ‘so safe I’d give it to my mother.”—Online patient post
The World Health Organization estimates that by 2020, 57 percent of the world’s population will be dealing with at least one chronic disease. These chronic disease patients require more than the occasional visit to their physicians, but rather a comprehensive approach to managing and living with their illnesses. But for increasingly overburdened medical systems across the world, how can we systematically plan and deliver the maximum patient value to these populations?
Let’s start by clarifying that this is a hard, as-of-yet unsolved problem. That being said, we think that the beginning of the answer is simple: leverage better tools to listen and understand what our patients are telling us, going beyond supporting their medical needs—supporting their emotional and social needs as well. With the rise in artificial intelligence and online patient communities, we can finally start to hear our patients both as individuals and as a collective whole.
"Leverage better tools to listen and understand what our patients are telling us, going beyond supporting their medical needs—supporting their emotional and social needs as well"
Earlier this year, we published in NEJM Catalyst on an analysis of more than half a million anonymous online chronic patient comments using Quid, an A.I. 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. And as we listened to the stories and journeys of these patients, we came to realize that the vast majority of chronic patients sought better support for the emotional and long-term challenges of living with their diseases, rather than pure medical issues. Indeed, six of the top eight unmet needs are 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, and managing expectations and understanding of how their disease will progress.
As we dive deeper into understanding these long-term emotional needs, we see that the overall sentiment of patients within each chronic disease has evolved as well. For example, patients with Alzheimer’s have become increasingly negative on the lack of clear expectations and testing, while epilepsy patients are more and more sensitive with fear around public seizure and resulting social fallout. In contrast, patients with diabetes have collectively become more positive online, as they form communities to support each other on glucose control and lifestyle modifications. Meanwhile, patients continue to struggle 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 ever more support in navigating how to live their lives with their illnesses, in addition to better and more effective medical treatments.
Clearly, there is more to do as healthcare leaders in supporting our patients comprehensively—addressing medical, emotional, and social needs. But finally, we are able to really hear and begin to answer their needs through technology.