Sunday, April 21, 2013

Hi ho, hi ho - to ASCO I will go!

Bring on the patient advocacy quarry; I’m ready to break rocks!

Thanks to a generous scholarship from the Conquer Cancer Foundation of the American Society of Clinical Oncology* I will be attending ASCO 2013 as a patient advocate.

I’ve wanted to go to ASCO ever since I first learned about it. That’s a long time. I’m almost 9 years NED. My diagnosis came concurrently with a big boost to my medical communications career, and that's when I learned about ASCO. I followed the presentations from halfway across the country and wondered what it felt like to be among such a large group of the most respected cancer care providers in the world. Soon I'll know.

To my fallen comrades (Nick, Lori) and to those who are ailing (Mila, MG, Lenore) I pledge to do you right. I’ll take notes! I’ll tweet! Above all I’ll try to keep my eyes and ears and mind open.


I had a different type of “ears open” experience last week at work. Taking advantage of a slowish Friday, I called in as the Patient-Centered Outcomes Research Institute’s (PCORI) Advisory Panel on Patient Engagement convened in DC. I listened to the 21 strangers introduce themselves to the public and one another.

What struck me in those introductions was the fuzziness of boundaries. Everybody on the panel pretty much presented their personal stories: sick children and personal suffering (Lyme disease, Parkinson’s, medical errors) alongside their professional identities (nurse, pharma researcher, attorney, minister).

It's a recognition that all of those experiences will help inform the plan  they create for change. Their charge, according to the Affordable Care Act, is assist patients, clinicians, purchasers, and policymakers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed… 
The PCORI patient engagement framework, as presented Friday, April 19, offers guidance but is short on specifics. I listened as the panelists thoughtfully began to consider next steps -- but I was distracted. My coworker in the next cube was embroiled in yet another conversation with her health plan or provider or pharmacist, advocating for her daughter’s needs. From her sarcasm I got a sense of how frustrated she must be. And she's an advanced practice nurse!

Clearly, those healthcare reform rocks aren't gonna break themselves: we've got work to do! 

*Supported by
  • Millennium: The Takeda Oncology Company 
  • Susan G. Komen for the Cure® – Breast Cancer Patient Advocates 
  • Teva Oncology
  •  Tracey W. Niederhuber Fund for Breast Cancer Patient Education

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