I had the honor of attending the annual HealtheVoices Conference in Chicago, Illinois, during the weekend of April 21. Now in its third year, this conference is organized by Janssen and brings together online patient advocates. This year’s conference expanded to include 105 patient advocates, representing 35 health communities. It has also become more global, and I had the pleasure of meeting people from Brazil, Taiwan, Argentina, Canada and Australia.
The workshop-driven format helps equip the advocates with tools, resources and inspiration to broaden their skills, expand their reach and become even stronger voices within their communities. Some workshops were led or sponsored by external partner companies and many were peer-led.
One workshop I attended was about patients attending medical meetings. Debbe McCall (@DebbeMcCall on Twitter), a patient advocate in the area of atrial fibrillation (AFib or AF), said it takes up to 14 years for information presented at medical meetings to make its way into everyday practice. Therefore, she attends medical meetings to share information with fellow patients, written in a way that we can all understand. Other workshops included how to generate credible content, principles for successful videos and how to manage stress.
HealtheVoices attendees have chronic medical conditions. Many also have commitments such as parenting, school or jobs, and in addition, they generate content and provide support to other patients around the globe. This is an incredible and special group. I’ve never seen anything like it in terms of taking a difficult situation and selflessly making it positive for other people. I will be thinking about this experience for a very long time to come.
The Janssen HealtheVoices team clearly puts their hearts into this conference. It was well-organized, and there was an inclusive and inspirational atmosphere. This year, the team introduced the HealtheVoices Impact Fund, a new grant offering created to support innovative efforts by online health advocates to serve and assist patient communities.
I had an opportunity to speak to the group on the last day, and share four things Janssen is committed to doing on behalf of patients:
- Incorporating direct patient insights into disease area strategies
- Incorporating direct patient voice into “target product profiles,” which are blueprints for solutions/medicines in development
- Incorporating direct patient insights into product formulation decisions, such as frequency of dosing, length of therapy, etc.
- Incorporating direct patient insights into clinical trials, including protocol design and providing summary results to patients
We cannot assume what people’s real needs are and must involve patients early and often to build better solutions. It was gratifying to hear from the advocates that they feel they have a seat at the Janssen table, and that Janssen has earned a seat at theirs. And, in my role as Global Patient Engagement Leader, I am committed to fostering a culture where we move from doing things for patients to doing things with patients.
Thank you to the HealtheVoices community for what you are doing on behalf of the people you advocate for. And, thank you too, HealtheVoices, for including me in the conference.
