Healthcare Does Not Have a Problem With Silos

August 3, 2017

Healthcare does not have a problem with silos.

In fact, there are no silos in healthcare; there are only boundaries.

If we truly want to change healthcare, we need to break boundaries.

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Housing is a Human Right

July 30, 2017

A year ago, through the kindness of a friend, I finally got a home.  I moved into a one-bedroom apartment with my cats in a quiet neighborhood after a year of homelessness.  And in this year, I have been able to heal and find myself again.

We talk about social determinants of health, but I think few people really understand how impactful they truly are, particularly housing.

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See, Hear, Understand

July 30, 2017

I’ve written 2 posts on communication this year.  I’ve deleted both – the only two posts I’ve ever deleted thus far after over 6 years and 182 (soon to be 183) posts published on this site.  The first I felt people weren’t ready to hear.  The second didn’t feel true to myself.  But I’m going to make a third attempt because in the past 9 months, the subject of communication persists, from politics to healthcare to social media and relationships, and weighs on me heavily.

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Why you should pause before posting your blood sugars

July 23, 2017

At least once a day a picture of someone’s blood glucose meter reading or continuous glucose meter (cgm) graph or posting of someone’s HbA1c comes across my twitter feed.  All by well-meaning diabetics who are trying to share their experiences – for support, to relay information, to pat themselves on the back for the very hard work that is the life of someone with type 1.  But I am asking them and all diabetics to please pause before posting your blood sugars.

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#IrishMed Chat – Patients and Caregivers Involvement in Research

July 19, 2017

The Research Loop made made its first tweetchat debut on #IrishMed last Wednesday, July 12, 2017.  Dr. Liam Farrell from Ireland founded and moderates this tweetchat every Wednesday at 10pm BST and 5pm EST, bringing together an international group of patients, caregivers, providers, researchers, and many more to discuss a range of healthcare topics.  For this tweetchat, Liam was kind enough to have me as the co-host to talk about patient and caregiver involvement in research.

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The Research Loop – My New Endeavor

June 26, 2017

Just minutes ago I went live with my new endeavor, The Research Loop.  Quite simply, it’s a website where patients and caregivers who have read a research article can submit feedback to researchers.  It’s an idea that I hope will elevate the patient and caregiver voice in research and transform the research process and synergistically enhance initiatives that already exist to include patients and caregivers in research.

If you want to learn all the ins and outs of The Research Loop you can head on over to the page and explore the site.  In addition to the feedback forms, I’ve posted resources and educational materials to help patients and caregivers better understand research and how they can get involved.  I’ve also written a white paper which you can download here: The Research Loop: Transforming the Research Process.

But I’d like to tell you here a bit more about the story behind The Research Loop.

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The Lost Years

June 7, 2017

17 years.  Nearly half my life spent in therapy.

20 years.  Because I should have been diagnosed 3 years earlier.

10 years.  Because that’s how long I went without the right diagnosis after starting therapy.

14 years.  Of the wrong medication.

Too many years lost.

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