A Different Type of Conference

Yesterday I took part in a panel at the ePharma Summit Marketing in a Digital World conference in NYC. The panel organized and led by WEGO Health’s Bob Brooks was titled Social Media for Pharma: A Match made in Heaven or Hell. 

I have attended ASCO annual meetings which were geared toward cancer research results and two Ovarian Cancer Survivors Courses by the Foundation for Women’s Cancer but this was the first time I attended or took part in a conference not geared completely toward ovarian cancer or cancer research but geared toward digital pharmaceutical marketing. My audience  and a majority of the other attendees were not other survivors or researchers but marketing directors, communication executives and marketing and healthcare technology professionals.  

I arrived early to be able to listen to a few of the other speakers. There were talks on how to use real-time data, how to use Big Data ( lots and lots of data) effectively, how to engage patients and how to build a relationship with patients to improve patient compliance in taking their prescription medication. 

Notable lines:

Data beats opinion. 

How have I satisfied my customer?

Engage your customer.

Get more personal.  

I was happy to see that the theme was how companies need to listen to their consumers/patients. 

Then the afternoon rolled around and it was time to walk up on the stage with the other panelists, Michael Weiss, a Crohn’s disease activist( www.hospitalpatient.com), Tiffany Peterson, a Lupus activist (tiffanyandlupus.com) and Casey Quinlan, an author and breast cancer activists( cancerforchristmas.com). They are amazing activitists going above and beyond to raise awareness of their diseases and speaking for other patients. 

My part of the panel focused on how Pharma could use social media and the internet to reach out to patients during drug shortages. Not just health care providers but patients who are on IV chemotherapy need shortage information too in order to plan their treatment going forward. I suggested that in addition to letters to physicians that pharma reach out to patients through a patient press release and infographics to explain processing steps, etc. I also highlighted the Doxil Supply page www.doxilsupply.com/ and twitter account @supplyupdate as examples of a good way to reach patients and how I wish it had been available more quickly. After the pane,l I was thrilled to have a chance to speak to Lisa, a digital marketing director from Janssen about the Doxil page.  

So yesterday I got a chance to share my feelings as a survivor and customer but I also learned. I learned that the FDA is responsible for notifying the public and patients regarding drug shortages. There are no FDA  rules for internet/ social media use by the pharmaceutical companies.  I think a new goal of mine should be how to get the FDA to better communicate information about IV shortages with us. Anyone know who I can write to at the FDA to get the ball rolling? 

Dee

Every Day is a Blessing!