Tuesday, March 1, 2016

Mixed Feelings as a Patient on Day Two of #ePharma

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This morning's talk by Judy Sewards says it all. I was ecstatic to be able to share that enthusiasm, the same enthusiasm I felt yesterday.

The opening from Judy above as well as Matthew Zachary's patient perspective started the morning with goosebumps. All stakeholders in the crowd were pumped up!

Even during some of the more technical conversations, people like Alicia Staley tried to keep the conversation focused on patients - or, at least, keeping in mind that patients were here and able to help.

I felt like we had made progress, like patients were FINALLY being valued.

As excited as I was about this conference yesterday and this morning, I left this afternoon feeling defeated and upset.

When I signed up for this, I knew that I would likely encounter some negative views on people like myself. Being a patient advocate, it's obvious I work for a healthcare system, yes, but my heart is focused on changing healthcare and helping my fellow patients.

I tried to not be too upset about all of this getting here.

I tried to keep in mind that patients are stereotypically seen as uneducated hypochondriacs going on WebMD to research their symptoms OR as people who think they know medicine and like to boss physicians and pharma around.

I tried to keep in mind that this is the first Patients Included™ version of the summit.

It worked fairly well until lunchtime, when there was little done to label the food as far as what was or wasn't gluten free. This is especially interesting given that patients with intolerances were attending.

I actually had to go out for lunch unless I just wanted to eat rice and salad sans dressing.

In the afternoon, a comment was made in a session about patients making 'crazy' comments on social media being tracked. Instead of redirecting the comment, the people presenting went with it.

They ran with the notion that getting feedback from patients is horrible as so many are militatntly angry or have mental health issues - and did it with laughter.


As a patient and a patient advocate, here in New York City because of those roles, I'm both frightened and enraged.

If they know patients are at this conference - and anyone in the main set of sessions this morning knows thanks to Alicia - why in the world would it be okay to discuss patient concerns in such a dismissive way?

If they know patients are here as press to blog about these sessions, why would anyone say these things?

Even if they didn't, why is this an acceptable way to refer to patients?

How can we expect physicians to stop belittling patients if the entire system is set up to do so like this?


We can pretend that this conference is wonderful with patient involvement, but until we change the viewpoints of people like those sitting in and running presentations, it isn't.

Many patients like myself would be happy to get ePharma there, but today?

I felt like a token patient.

That's not a role this patient plays well.

About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  

She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event. 
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