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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Not simply saying yes

January 3, 2017

At the same time I wrote the email in my previous post about directions in advocacy, I was asked by a company to write a post for their blog – a new initiative to help elevate patient stories.  While I was deeply flattered by the words of the person who reached out to me, I was troubled by the idea of simply saying yes.  In part because I think that patient advocates have gone too long doing many things for free and in part because of issues of independence and conflicts of interest.

I wrote back to the company and started a conversation with them about what it means when they ask someone to write for their blog.  I thought I’d share my email response here as again I think it speaks to issues many patient advocates face and one that needs to be addressed as the patient movement continues to mature.  There needs to be an industry standard for how to ask patients to contribute and what patients get in return for their involvement.  I think we need to be bluntly honest with those who ask us to contribute our stories and not agree to contributing simply because we are asked.

Here’s what I wrote:

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Who Is Included?

December 5, 2016

I can’t count the number of times the topic of who is and should be included in policy discussions and conferences comes up.  Just this week I encountered two examples where patients though ostensibly “included” were not included really at all.  Considering how long this has been an issue and how often it is discussed in patient communities, I am still disappointed that the discussion continues and inclusivity has not really expanded to mean all patients included.

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What to say

September 3, 2016

Today I ran into my old figure skating coach.  She was my first coach some 24 years ago and while it was a delight to see her, it was also incredibly awkward.  The thing is, whether I’m running into an old acquaintance or meeting new people, I’m never quite sure what to say.

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When You Break a Jar of Hope

January 13, 2015

When you break a jar of hope it may seem like a rather small thing.  It may seem like no big deal, just a jar with words inside.  But when you break a jar of hope, you break a piece of my heart.

I started making “Jars of Hope” in 2011 when I worked for a nonprofit.  We would give them to cancer patients receiving treatment to help inspire them through their very difficult journeys.  And I thought that it was the perfect idea to expand to patients and caregivers wherever they may be – for we all need inspiration, especially on the hard days.

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Teaching Doctors

January 12, 2015

I am incredibly excited to be invited as an ePatient Scholar to speak at Stanford’s Medicine X in September 2015.  I have had the honour of being a scholar in 2012 on the design track with IDEO and remotely in 2014 to talk about the under-served.  This time though, I get to be a part of something new and hopefully incredibly powerful – teaching doctors as part of Medicine X Ed.

Every time I enter a doctor’s office or meet a doctor at an ER, I see it as an opportunity to teach doctors.  Long gone are the days where I allow them to treat me with paternalistic gloves.  I expect to be a colleague in my care and that requires that I teach them as much as they teach me.

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I Am Them

September 6, 2014

My friend Carolyn Thomas posted an open letter I wrote on her website Heart Sisters.  As a result, Medicine X asked me to participate in their conference this year and presented my reading a shorter version – video below.

“Dear Medicine X Conference organizers, Read the rest of this entry »