Social media and the internet have given rise to a new breed of “health influencers” and the movement is fundamentally changing the role of patient advocacy groups.
That was among the talking points highlighted in The Evolving Role of Patient Advocates, a report published by PharmaVoice.
“While pharma has long had relationships with advocacy organizations, there is a growing wave of individual patients who are willing to speak up, be engaged, and provide insights to help the industry identify opportunities to improve both the patient experience and care,” the report states.
Through blogs and social media channels “health influencers” share peer-to-peer content that raises awareness and helps others to better manage their health.
As David Goldsmith, chief strategy ofﬁcer at online patient leader network, WEGO Health, told PharmaVoice: “Advocacy as a whole is evolving, and micro-advocacy is becoming a powerful complement to traditional models.”
The power of trust
With more and more companies discovering that information shared by trusted health inﬂuencers is a powerful way to reach deeper into patient communities, the move is changing the dynamics of advocacy, he continues.
On top of their individual work, many trusted health influencers are also heavily involved in organized patient advocacy groups, and most believe the two methods complement each other.
Some challenges, Barby Ingle, president of the International Pain Foundation says, require a macro approach, while others are better suited to the micro, health influencer avenue.
“Advocacy groups have taught patients to have a voice and individual patients are better at communicating direct input.”
At NORD (National Organization of Rare Disorders),Tim Boyd, director of state policy, agrees and says individual patient advocates are instrumental to their operation. “Given that NORD can only be in so many places at once, policies such as this [the creation of a Rare Disease Advisory Council in Minnesota], would not be implemented if not for the support of dedicated patient advocates throughout the country.”
Kristina Figueroa, who has Type 1 diabetes, adds to this, telling the report authors that her personal projects led to her become more involved with patient advocacy groups.
“I became increasingly more involved in advocacy organizations for various patient groups, developing partnerships with these groups, and helping stir the appetite for patient engagement in protocol and clinical trial design conversations.”
“I also joined the local board of directors for one of these advocacy groups, and continue to have the opportunity to develop relationships, fundraise, and engage in strategy with them.”
The macro and micro approaches, for these advocates at least, seemed to act as a virtuous circle, with the knowledge gained from each feeding into each other
“As I started sharing my experiences and attending patient and industry conferences, my personal brand rapidly began to shift into a patient opinion leader, and I ﬁnally had the chance to engage with pharma to provide my own feedback,” Kristina says.
To read the full report in PharmaVoice, click here.
PharmaVOICE (April 2019) The Evolving Role of Patient Advocates. Contributed by Robin Robinson