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Beyond the School of Hard Knocks

Wednesday, September 16, 2015

Where do you go to learn how to be a caregiver of a child with Cystic Fibrosis or other chronic disease?

A CF doctor goes to med school.  A nurse goes to nursing school. A CF social worker goes to the School of Social Work.  But where does a patient/caregiver go to learn how to navigate and thrive in the healthcare system?

For patients and families like mine, we pretty much attend the School of Hard-Knocks.  We learn on to job and figure it out as we go along.

How do clinicians continue learning, even after finishing school?  Medical conferences.

How does a patient/caregiver continue learning??

I propose we also go to: Medical conferences.

In the next two months, I am excited to attend two medical conferences that I hope will help me gain knowledge, insight and support to keep up with our fight against Cystic Fibrosis.

In October, for the first time, I'll be attending the North American Cystic Fibrosis Conference (NACFC) where doctors, nurses, respiratory therapists, researchers and other CF clinicians go to present and learn the latest in CF research.

This year, more than ever before, caregivers of CF patients are expected to attend NACFC as the CF Foundation has provided a price-break for families of those with CF so they can go and learn alongside the people charged with helping them.  Family members of CF patients have also been asked to present about their experiences.

(Patients, on the other hand, cannot attend NACFC due to the cruel reality of the disease which presents the real issue of spreading dangerous life-threatening infections to each other.  This makes me SO sad.  But portions of NACFC will be available for all who cannot attend to view online.)

There is another conference that takes place next week I'm equally looking forward to attending.  It's called MedX.  MedX is an innovative and cutting-edge annual medical conference held at Stanford University.  This cross-disease learning conference (aka not CF-specific) is made up of clinicians, researchers, patients and entrepreneurs working to highlight the changes happening in the healthcare system and to support learning from each other.

I recently received a scholarship to attend and the invitation to serve as an ePatient delegate at MedX. I will be there representing Bennett.  As an ePatient delegate, I have been invited to share my patient experiences, to help identify ways I think we can improve our broken health system and to share the great things I learn with others through social media (sorry, in advance, Twitter!).

MedX has asked me to be a part of a really interesting panel discussing transparency in healthcare and the value of patients having access to information.  The topic we will be discussing is the recent ProPublica's article, "The Surgeon Scorecard" which received both praise and criticism when the non-profit investigative news organization used public data to help offer patients a way to see which doctor is "better" or "worse".  (Here's a nicely condensed Today Show version of the debate at hand: http://www.today.com/health/surgeon-scorecard-aims-help-you-find-doctors-lowest-complication-rates-t33186).  I am really looking forward to getting to hear in person from the authors of the study and share my own feelings about the article from a patient's perspective.

Being a part of a medical conference may not be interesting for some patients.  And that's ok.  But I think there is something hugely important about patients, in general, being a part of medical conferences and the research that is presented there.  So many clinicians work within silos, sharing information and ideas amongst themselves, in hopes to improve the health outcomes of patients.  But there is no member more invested in improving patient outcomes than the patient his/herself.  So, it's important to give patients a seat at that table.

I am grateful for medical conferences and organizations like MedX and FlipTheClinic and the Society for Participatory Medicine for their effort to give voice to the patients who are no longer passive participants in their own healthcare.  Patients now have the ability to find information, do their own research, track their own health data, etc.  They are becoming their own experts in their care and they need to be recognized as one.  Who knows best what patients need?  Patients do!  So, let's work to learn from them!

There is so much about our healthcare system that is good.  As Americans, we have access to some of the best patient care ever available.  I am thankful that giving patients the opportunity to teach clinicians, learn alongside clinicians and work in collaboration with clinicians will only improve the way we do healthcare.

I never wanted to enter the School of Caring for a Child With a Chronic Disease.  But if I'm going to have to be here, I might as well speak up in class and learn as much as I can!


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