Heathe Voices 2016 – Deeply Rooted Connections

Last year I wrote a post about attending Healthe Voices 2015 in Jersey City. It was an amazing new event hosted by Janssen Pharmaceutical and Everyday Health that brought together 60 online advocates across many different conditions to help us strengthen our advocacy work.

This year, I was honored to be asked to be on the Advisory Panel to help create Healthe Voices 2016. I, along with seven other amazing health advocates, worked with Janssen to put together the program for this year’s conference. On April 15, 2016, nearly 100 online advocates came together in my hometown of Chicago.

We started Friday night with some socializing and welcome addresses from doctor Sanjay Gupta and the global chairman of Janssen Pharmaceuticals, Joaquin Duato who, after saying he’s read my blog (squee!), he told a story about how he learned to value the community from his grandmother, a pharmacist. I loved that. I know how much I value our pharmacist and all she and her team do for my family. During dinner we heard a keynote speech from Jamie Heywood. I have to admit – his story about testing possible cures for ALS was inspiring but, I have to admit, it was so technical that most of it went over my head. He did talk about his new venture, Patients Like Me, and how it is collecting information from patients on a variety of conditions, over long periods of time, to really understand these conditions, the treatments, side effects, and more. I’m checking it out and will write a post about it later in the summer.

Saturday was packed with awesome breakouts designed to help us improve our advocacy efforts.  I want to share with you what I learned from the best of them:


Incorporating Video – Josh Robbins


Josh is an awesome advocate for people with HIV. His blog, I’m Still Josh, is fun and informative. I have to admit, I shy away from video because when I write, I can edit my thoughts as I go. On video, if I do that, I sound like a bumbling dork.  But Josh as some great tips on using video to attract a wider audience:

  • Use an app that lets you record and teleprompt so you don’t have to memorize. Josh uses Prompt Smart and records all his videos on an iPhone so they are formatted perfectly for social media
  • Buy – don’t steal – music and graphics cheap from Audio Jungle and Fiverr
  • Keep your videos under 60 seconds to keep viewers engaged – or, 15 seconds for Twitter and Instagram
  • Live stream events and topics to really boost engagement and get the word out

Expect to see some videos coming from me soon as I try it out!

Better Together – Working as a Community to Elevate Your Cause: Laurel Netolicky


Laurel is with WEGO Health and builds communities between patient advocates and clinicians every day. She had great tips on how to strengthen advocacy online. Some of the ones that stuck with me are:

  • Foster the male voice – men are often reluctant to tell their stories because of a desire to appear strong
  • Encourage guest posts and comments – there is strength in pooling our voices together, even if our causes are different
  • Stay positive. It’s easy to get angry when you’re fighting stigma. I’m definitely guilty of posting some aggressive comments and posts.  It’s easier to catch flies with honey than vinegar, as my grandmother always said. I need to remember that.

I’ll tell you about the other breakouts later this week.

Note: While I was compensated by Janssen Pharmaceuticals for my participation on the Advisory Panel, my thoughts and content of this blog post is my own.