The Changing World of Patient Advocacy

By Jason Brandt (@JasonDMG3)

Thanks to social media, patient advocacy is moving from focusing on lobbying government officials on Capitol Hill, towards working more with individuals online to create local change in communities.

Professional lobbyists have always been a cherished or envied part of the patient-advocacy groups retinue. Theyve had the valuable ability to maneuver Washingtons intricate maze to get their issues before the proper committees and sub-committees, in hopes of getting government funding for scientific research or patient care, or perhaps more importantly, getting their issues in the national spotlight.

Patient-advocacy groups main goals are:

1. Making sure that the public knows what the disease is, what its symptoms are, what the treatments are, what they can do personally, and how to get themselves or their loved ones professionally diagnosed and treated.
2. Helping professionals stay informed of the latest advances and findings in diagnosis and treatment.
3. Getting treatment covered by health insurance, Medicare and Medicaid, and otherwise made available and affordable to the patietns who need it.
4. Motivating and funding research for new and improved treatments, cures or preventions.
5. Helping regulatory bodies see the importance of ensuring that treatments are monitored to ensure that products are available, safe, effective, accessible and affordable, and that unsafe or ineffective ones are prevented from confusing or harming patients.

These havent really changed. What HAS changed is that advocacy groups have improved abilities to reach local individuals to generate change from the bottom up. Grassroots is getting easier, and the fertilizer is social media.

One example of how this was just done recently is Autism Speaks and their annual Light It Up Blue campaign in the beginning of April. Their main goal being to draw attention to the prevalence of undiagnosed autism, Light It Up Blue encourages people to wear clothing and change lightbulbs to their signature color, encouraging conversation about autism. They have a website – and one just for the campaign – and a long-term promotional agreement with Toys “R Us. So far, pretty standard fare, accompanied by the normal PR and advertising building blocks.

But their Facebook page, and Toys R Uss Facebook page, are the added social elements that have taken their campaign over the top: Toys “R Uss Facebook page has 1.4 million fans and Autism Speaks has 770 thousand. Thats over two million digitally engaged participants.

Has social media changed how Autism Speaks works? I suspect theyd say no, and Id agree. But its clearly becoming a – pardon the pun – guiding light for their work. Their most engaged fans, their patient stories, their encouragement and engagement, are all centered there, and theyre making the most out of those interactions.

If youre in pharma, are you looking for patient-advocacy activity through social media? You should be. Thats where they are!

And if youre on the patient-advocacy side yourself: are you learning from your compatriots? These platforms are free, and theyre hot and buzzing. You need to be there!