Patient Advocates and Strength in Numbers

I spent last weekend in the beautiful Hyatt Hotel in Jersey City, New Jersey, directly across the Hudson from Manhattan (check out that view!), at the HealtheVoices 2015.  This conference, sponsored by Janssen Pharmaceutical and Everyday Health brought together more than 60 of the best bloggers and patient activists from across the country to network and learn more about how online patient advocacy is impacting healthcare.

Before I recap, I should say that Janssen Pharmaceutical paid for my travel, hotel, and meal expenses to attend the conference, but all images, comments, and opinions are mine and are not sponsored.

We started Friday night with a reception and dinner to get to know each other.  There were bloggers and activists there representing cancer, diabetes, arthritis, autoimmune diseases, IBD and Crohn’s Disease, HIV, schizophrenia, and a few others.   I was excited to meet in person fellow mental health online advocates Dr. John Grohol of Psych Central, Melanie Jimenez of Understanding Schizophrenia, Ashley Smith of Overcoming Schizophrenia, and Lisa Lambert, of the Parent / Professional Advocacy League.

During dinner we heard a moving speech from Clare Martorana, Executive Vice President & General Manager, Consumer Health & Wellness at Everyday Health, about what drew her to a career in online heath and how special this first-of-its-kind conference was.  Her talk left me excited to get to the meat of the conference on Saturday.

Saturday was packed full of interesting speakers about diverse subjects.  First up was ZDoggMD, or Dr. Zubin Damania, who gave an amazing talk about how he gave up a career at Stanford Medical Center to test how concierge medicine could change patient outcomes and the cost of healthcare by using an integrated, pay-for-membership model much like a gym membership.  His test bed, Turntable Health, charges just $80 a month and includes not just urgent care, but preventative health, therapy, and even yoga! In his “spare” time, he creates dope YouTube videos like this one (“dope” is still a thing, right?).


Breakout Sessions

The day was really packed, with four different breakout sessions and a lunchtime speaker.

Session One – Compassion Fatigue

The first session discussed the fatigue that can come as part of being an online health advocate.  When you have an online as an advocate, you often get very close to people who reach out to you for help, support, and camaraderie.  Carrying the weight of everyone’s stories can be overwhelming, and requires another level of self-care that I know I am prone to forget.  The session was hosted by diabetes blogger Kerry Sparling and leukemia blogger Dr. Brian Koffman, and included several questions to ask ourselves and strategies to reduce compassion fatigue.  I came away from the session understanding I have some real decisions to make about other sites I have been blogging for. More on that to come.

Lunch Speaker – Trends in Health Technology

Over lunch, Susannah Fox of the Robert Wood Johnson Foundation shared with us some interesting facts on how technology is advancing healthcare and advocacy.  There was great discussion with the audience as well, and during her talk, I really came to realize how much leverage we have as advocates together – not just for each illness, but collectively as the voice of the patient in healthcare.  I think there’s something there that I will be exploring more over this year.

Session Two – Legal Issues in Blogging

After lunch we heard from Jimmy Nguyen, a lawyer and blogger himself on some of the legal pratfalls we need to avoid as bloggers.  I learned a lot about libel and I was glad to hear that I am on the right track when I use images for my blog – they are all either taken by me or have a Creative Commons license. I also learned that I may have a little beef with Janssen over their Mindstorm video on schizophrenia – I may be able to claim they are violating my trademark, since my blog as been around nearly two years longer than that video!

Session Three – Measuring Success

The third session featured Tim Cigelske of Marquette University and was all about how to use tools and services online to make posting easier, and measure the reach of our advocacy.  There was some twitter murmur from the attendees that if you’re measuring your success in terms of number of readers or followers, you might be in it for the wrong reasons, but it was interesting to learn how to see what my twitter followers are in to, and if I am reaching people who are interested in mental health (no newsflash – I am).

Session Four – Advocacy as a Career

The final session was hosted by Jenny Prokopy, a patient advocate herself, at Jenny gave us a view into how she turned her online advocacy into a full-time job. While that may work for some, it’s not something I’m interested in, but I appreciated her talk.
Saturday wrapped up with small group dinners.  I was assigned to a group about using social media for social good, but we spent our few hours over a fabulous meal getting to know each other better instead.  I had a fabulous and emotional conversation with Jennifer Campisano who writes Booby and the Beast about living with stage four metastatic breast cancer.  Jennifer was diagnosed at age 32 when her adorable son Quinn was just a few months old.  Five years later, she’s not only alive, she’s kickin’ cancer’s ass. I fell in love with her over risotto and red wine.
I left early Sunday morning newly energized about my blog and my mission to educate teachers and doctors about childhood onset serious mental illness, and support parents who are living this journey.  I can’t wait until HealtheVoices16 – I hope Janssen will have me again.  They put on an amazing conference, especially Caroline Pavis, who worked for months to bring this event together.
All of us – totally stole this pic from Tonic (



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