From the Past, Into the Future

Parts of my past collide to create my future. I am a constant learner – learning, doing, creating, building visions and bringing those into the present. I learn from others around me, from my pre-filtered posts in Twitter. Through Twitter, essentially I get vetted content to read.  It is especially important as I work full time, manage a house-hold and raise two small children.  Both have medical issues, both on IEPs, both who’s demands are far greater than what is ‘normal’.  Both who are delightful. My future.

But the past collided with these quotes from recent “Twitter” suggested reading content:

From ePatient Dave “How the e-patient community helped save my life” in BMJ:

Please, let patients help improve healthcare. Let patients help steer our decisions, strategic and practical. Let patients help define what value in medicine is.

    In another article he commented, “Online patient-helpers with a chronic disease can be valuable resources for other patients with the same condition . . . Clinicians must keep up to date      on a wide variety of medical conditions while seeing dozens of patients a day. Patient-helpers . . . will typically know only about their one disease, but since they can devote a great deal of time to it, their knowledge within that single narrow niche can be impressive.”10

My reminder to my past is the section of my dissertation called the Environmental Value Chain Analysis, where I outline how different companies can find environmental value from waste electronics – but it’s all in the perspective of the person/group/company receiving the value. A 2 year old cell phone has different perceived value depending on where, who, how you are in the world.  And Dave’s point, that Patients/Caregivers might have ideas of their own to derive value.  This is incumbent to building a better healthcare future for us all.

The other quote from Dr Tom Ferguson, it speaks directly to the knowledge that I’ve gained from other moms and dads in the CHARGE Syndrome Foundation.  Their advice and wisdom has been invaluable in creating and fostering a world for Alexis. They have recommended treatments, provided their perspectives, supported our decisions and suggested alternatives.  It has truly allowed me to define value for Alexis and her life.

This is a great bird’s eye view of an executive having to experience her hospital as a caregiver for her mother.

Lourdes Boue comments, “Yet, all the time I have spent in these halls as a hospital executive did not fully prepare me for the patient’s-eye view of hospital care.”

I loved this article because it is how I see the hospital – from the caregivers perspective.  I can see the operational inefficiencies from my mechanical engineering training – I’ve studied manufacturing processes, order fulfillment systems, lean manufacturing, six sigma — even worked as a manufacturing process engineer!  Not that patients are widgets, but for sure – they waste a lot of time in the process.  It’s painful to live through and frightening to see the errors that can happen, the quality lapses.  It’s not often that in a short period of time, my internet reading is a throw-back to my school days.

But both of these articles reminded me why I have to be a voice for Alexis.  I have prior experience and expertise that allows me to see through a refreshing lens.  We must work to improve healthcare, from looking at the value from patient’s perspective and living the patient experience.  Until we fully do that, we will only be putting lip stick on a pig (no offense to pigs out there).  We must do better.  


Posted on 04/22, in Uncategorized. Bookmark the permalink. 1 Comment.

  1. You are SPOT on regarding how value is derived. So far nobody (zero) in medicine has reacted to that point in my BMJ essay; congrats, you’re the first. No surprise, you’re (a) a patient-parent (consumer in the system) and (b) not a medico.

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