Thursday, March 10, 2016

#ePharma16: A Patient Reflects

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Upon arriving in New York for the ePharma Summit 2016, I was extremely excited. Other patients I knew were attending and this was an opportunity to give me the ability to see what happens behind the scenes in the pharmaceutical world.

As a patient, the only time I get to see that is when I'm chosen for a focus group from a pharmaceutical company.

I knew that there would be some upsetting things, that many there may not be used to or excited about the patient engagement style that many patient leaders have adopted. The same goes for interacting with patients.

I still was taken aback and upset when I saw these things happen.

Not everyone had the experience at ePharma this year as myself and a few others. It seemed to be that many of the patients who stuck together throughout the sessions really enjoyed their experience.

Not all of my experiences were icky. The first day of ePharma made the entire trip worth it.

As a patient, here are some of my critiques from the summit as well as some suggestions for the future.

I have mobility issues. Being in New York where walking and moving fast is the norm seemed to highlight those. The breakout sessions were often so close together or running late that it made it difficult to maneuver three floors of rooms.

I also have food allergies and nutritional issues. One of the days, I ended up having to run out for lunch because all I could eat was white rice and salad sans dressing.

Obviously, the biggest concern that I had was with the lack of inclusion of - and occasional demonization or poking fun at - patients.


Don't get me wrong - patients do this towards pharma, too, but...

THIS HAS TO CHANGE. 

So far, it hasn't changed yet because...

It's something that we're all comfortable with, which means that it's easy to fall into those combative roles. You saw it if you were following the summit via social media with myself and other patients jumping into the outraged patient roles we're so used to filling.

You heard about it if you read my post about sitting with representatives from Amgen (who, as a side note, reached out and apologized for what went down).

"Thanks for highlighting the problem we already know exists," right?

Fear not! I have some solutions!

We HAVE to stop being focused on being afraid of each other.

Patients need to be more involved - pay for us to be there whether we attend as guest bloggers or with patient organizations. Cover expenses for us so that we can sit at the table with you, stay in a room on the same floor, and really be able to engage in conversations with you.

There should be an ice-breaker on the first night that brings together patients and pharma representatives to destroy the silos that everyone hates.

Pharma has to learn patient-centric language versus monetary/marketing language. We don't all want to kill ads, but make them more intuitive and relatable.

Remember that we're not just customers. We're incredibly sick, often in pretty good amounts of debt with medical bills, and can't afford to be 'compliant' with medications sometimes.

Make them affordable for us.

We need each other.

As a patient, I rely on pharma companies in order to do a number of basic functions - breathing, eating, moving, etc.

I cannot survive without you, but you cannot survive without us either.

We have to start working together to plan true transformational change.

Strategies and processes have to change.

Systems have to be built and rebuilt to be inclusive of patients.

During ePharma, companies were discussing hiring these firms to figure out what patents are actually thinking and what they want.

Us patients? We are right here. We are on social media, in support groups, working with organizations on changing the health care world.

You don't have to pay a third party to get our thoughts.

ASK US.

We want to help you.

We want to make your ads, your medications, your charity work more relevant to patients. 

If it doesn't help us, it might help the next person, and that is why patients like me go to conferences and summits like ePharma on our own time and dime.

And if that collaboration doesn't exist? There are patients already working on the next big things - crowdfunding or crowdsourcing for cures.

Don't get left behind.



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.  


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