Kelly O’Neill Young: Industry puts out its hand to support patient leaders

Over the past eight years, I have attended many conferences and scientific meetings. As a reporter, presenter, or panelist, I have informed the public, challenged industry, and uplifted patients and caregivers. But until recently I had never been to a conference aimed specifically at helping lay health advocates “to learn, share, and connect” with other advocates and to take advantage of optional—albeit conspicuous—contact with some leading companies in the consumer health industry. The meeting in question was the third HealtheVoices conference in the US—an initiative of Janssen Pharmaceuticals, a division of Johnson & Johnson, in partnership with other sponsors including Everyday Health, WEGO Health, and Healthline Media.

There were 105 attendees. Many wore “Veteran” badges, having attended previous meetings, and they tended to interact with each other more. The majority of patient attendees were from the HIV, inflammatory bowel disease, and diabetes communities, but patient advocates for several other conditions were there, including psoriasis, mental health, various cancers, and/or cardiovascular conditions.

When I asked about the objective of the meeting a month earlier, I had been told: “The meeting is for you health advocates. Just to help you.” I think the label most appropriate for such initiatives is probably “public relations,” which suggests that the foremost thing the sponsors received was goodwill. After eight years in this area, I think goodwill is a sufficient motive for such a project. It supports a bridge to patient engagement; and while it is not the bridge itself, it seems like an appropriate step.

Day one of the conference (held at the Swissotel in Chicago) emphasized topics related to advocates maintaining their own mental health and energy while advocating for others. The dinner address was given by Michael Sneed (worldwide vice president, global corporate affairs and chief communication officer, Johnson & Johnson), which is an indication of how valuable the initiative is to Janssen.

The second full day was filled with sessions to help advocates improve their skills and strategies in their work. Topics included attending medical meetings, making money to support advocacy, creating better videos, and advocating for improved public policy.

The health condition I most often advocate for is rheumatoid arthritis (many patients prefer rheumatoid disease). Traveling is often difficult for me—in part due to inadequate awareness and accommodation for disabilities related to my RA. I was therefore unable to attend an arranged dinner out of the conference center because the travel and meetings proved too difficult for my knees. Transportation by bus was also problematic even after organizers “re-confirmed” my preference for my companion to travel with me.

For me, the most awkward thing about the conference was feeling pressed into a norm for health advocates that I felt I didn’t fit into. Although I suspect it was done in the spirit of encouraging better health and inclusivity, it was uncomfortable at times to feel pressured to be a vegan or gluten free, for example. The food was mostly raw, vegan, gluten free, and low sodium. It was also a curious paradox to see many of the people there consuming these one bowl health food meals with Coke, Gatorade, and candy bars served as snacks—maybe because they were still hungry.

On the final day, Peg Forestall of Janssen announced a $30 000 donation to a new “Impact Fund” that will supply grants for online health advocates for certain types of projects, such as local health fairs. In a room full of 100 advocates who represented thousands more, the need for funding opportunities is certainly great. However, the fund seemed small for an enterprise the size of Janssen.

However, Katherine Capperella, global patient engagement leader at Janssen, made the most significant statement of the weekend. She said that the 74 year old company credo of doing all things to benefit patients must be updated to doing all things “with patients.” If Janssen moves forward in accordance with this statement, it will be worth more than any weekend conference ever could be.

Kelly O’Neill Young has fought unrelenting rheumatoid disease since 2006. Through her writing, speaking, and social media channels, she works to bridge knowledge gaps between people living with rheumatoid disease, the public, and the medical community. In 2009 Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about rheumatoid arthritis. She created the hashtag #rheum and built a large online community. She writes periodically for medical journals and websites, and has worked with the Mayo Clinic, PCORI, the Food and Drug Administration (FDA), and other organizations. She is the president of the Rheumatoid Patient Foundation. 

Competing interests: The HealtheVoices program provided my airfare, lodging, and meals. I was not otherwise compensated for my attendance.