The human factor in health

In a conversation dominated by technologies, cost and policies, the humanity of health is often lost.

There is an important story missing from many of the conversations about the health system in the US — the one that looks closely at the needs of people and their everyday experiences of health.

After reading article after article about cutting edge science, new policies, and organizations disrupting health, I can’t help but wonder where the honest and real portrait of the most complex, challenged patients and their direct experience of the good (and bad) of health is. Where is the insight into people’s relationship to health, how decisions are made, the questions that are (or aren’t) being asked, the emotions being wrestling with, and what is truly valued? Too much of health is still focused on what a patient should be like vs. who they really are. Too often people are a footnote in the health story. In an atmosphere of businesses serving businesses, in the end, a picture of the real customer gets lost.

True impact and change means honestly looking through the eyes of patients, and their care givers, understanding them as people, not cogs in a machine. The best way to surface a new lens on the health experience is by deeply understanding how people are living well everyday. In the big conversations about big systems, the small untold stories we can all relate to needs to be louder. Perhaps by telling these, and celebrating these voices, we can begin to create a new view on health — one that is embedded in lifestyle, that optimizes an individual’s potential, that is focused on their investment in health outcomes and uniquely tailored to their needs. A deeper understanding of the people being served, and those doing the serving, could better inform how we build a more personal, human, holistic, approach to health.

In listening to the true stories of people taking charge and transforming their own experience of health in daily life, there are lessons for us all. By spending the time with the people living it everyday, and the care givers that help them, we can better understand where to really focus investment in change. By hearing the positive stories of triumph, not just the tales of picking up the broken pieces, and tales of life moments, not medical events, we can shift our understanding.

Through stories of health transformation, and life transformation, of several families — facing critical issues such as end-of-life, disability, chronic disease, depression, and limited access to care — we can learn from the edges, see everyday truths, gain insight, build empathy and capture principles for designing a health experience around people’s needs.

It’s time to hear the stories of real people, and learn from their unique experience. These should help to not only inspire our own lives, deepen our understanding but also inform policy, interventions, and new systems that are grounded in potential for impact.

A collection of stories to come.

  • Beginnings — seeing the health system as a first time family struggling through pregnancy and birth. What do soon-to-be and new parents really need to navigate this big change?
  • Discovering — learning from patients who didn’t give up, and pursued self diagnosis and treatment. How can we learn from those who are acting as their own doctor — learning more about themselves, their treatment and tailoring health to their needs?
  • Transforming — hearing from patients taking charge, reinventing their life and shifting the prognosis. How can we learn from those who have overcome barriers and stayed committed in order to shift their health?
  • Transitioning — understanding the journey of becoming who you are, following the complex social, physical, emotional journey of transgender patients. How can we better understand the interplay of medical and non-medical — social, physical and emotional?
  • Optimizing — inspiring examples of athletes, bio-hackers and personal health experimenters pushing the boundaries. What can we learn from the edges of performance and enhancement?
  • Endings— learning from families that turned the end of life experience into what they needed it to be. What practices, rituals and supports were necessary to the families facing this incredibly challenging experience?
  • Mastering — discovering pockets of excellence and foundations for wellness. What new models of wellbeing are proving value? What can we learn from communities of extreme health?

These stories are a unique opportunity to see health through a new lens, gain insight from people’s experience with their own health, their relationship to care givers, what they value most, their everyday decisions and how they are thriving. They are all of our stories.

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