Engaging Patients & Families in a Healthcare System for the 21st Century

A colleague passed on a recent blog post by Eric Dishman at Intel -- "Think Big" as We Engage Patients & Families in a Healthcare System for the 21st Century -- and asked me to write a reaction to it.

As background, my youngest child was born in 2006 with a number of acute and chronic conditions. Developmental pediatricians, ENT docs, gastroenterologists, cardiologists, neurologists, plastic surgeons, therapists – all of them had thoughts, directions, and diagnoses. The subsequent procedures, medications, and therapy services provided in the first year alone created a BIG binder full of receipts, charts, further directions, and research. With every passing year, the volume of information and analysis gets bigger, and lives in disparate systems, or worse, file folders sitting on a bookshelf.

The amount of information to take in and keep up for my son is daunting, and yet he is no different from anyone else with a complex medical condition. However, in spite of all available technology, we find ourselves transferring information by word of mouth to the various providers. My son is beyond fortunate to have a trained biologist as his mother, as she can understand the minutiae of treatment and changing directions from a slew of doctors and can relay this information correctly by memory. I can scarcely bear to think of numerous others who don’t have a highly educated mother’s understanding, organization, and unrelenting demand for the best for her little boy.

Back to Eric’s post. I watched the videos he referenced, found at http://www.aahsa.org/Imagine/, and was extremely heartened by the convergence of technology that distributes dynamic information between patients and caregivers. Not everyone has years of training in chemistry or anatomy, but with technology, we can distribute that information in usable, practical ways right now.

To Eric’s question about how to engage patients and family members, I think policy makers need to stick to the singular focus on what we ALL want out of the health care system. We want to heal the sick and keep the rest from getting sick. In IT terms, that is the one requirement that should guide our decisions. One idea is that all policy decisions should have direct and ongoing input from patients and caregivers from diverse areas – aging, mental and physical disabilities, low income, minority, long term care, and others come to mind as potential advisory committees.

For our VARs and vendors, the profits will come from systems and data architecture that focus on delivering care and information in easy to use, scalable and affordable ways. For me personally, the payoff will be comprehensive analysis and real-time guidance for my son that will make his (and his mother’s) as full as possible.