You’re likely familiar with the term patient advocacy.  Maybe you ran a 5k to raise money for a cause or you’ve seen the different ribbons that bring awareness to certain conditions.  Because of these great efforts, knowledge of patient advocacy is sometimes limited to large, nationwide or global organizations that represent one condition.  But advocacy is so much richer than this alone.

What does patient advocacy mean, really? 

There’s a lot that goes on behind the scenes with patient advocacy groups.  The full reach of these communities and organizations might even be a mystery to you. 

With any diagnosis, patients are likely to need a source of information and support — no matter how chronic their condition might be.  And these days, access to groups online give space to accessible information.  While physicians provide helpful information, advocacy steps in to be a voice for patients where it’s needed.  These groups provide guidance that is informed by the community. 

Power in Numbers

Advocacy goes a step further. By getting connected to others who understand the journey to diagnosis, there’s a comfort that you’re not alone. Knowing there’s a place where others have lived the same experience can have a big impact. There’s a real sense of community in both virtual and in-person advocacy settings.  Most recently, we’ve seen this snowball in size during the pandemic.

There are countless types of advocacy groups. Grassroots and regional communities offer in person meet ups and discussions. Innovative tech startups can be a source of early-adopter patients who are interested in learning more about their conditions and inclined to participate in advocacy efforts.

Even health influencers offer a type of advocacy — they are community members and most times, patients, with specific conditions that amass a following of other patients.  Their vulnerability and willingness to share their story becomes a light for many as they connect over their daily experiences.

How Will You Connect?

In the research world, each type of advocacy group is so important to inclusive progress.  There are advocacy groups that represent specific races, religions, sexualities and genders.  Some may bring an understanding of the ‘typical’ patient, while others highlight regional inequalities.  While health influencers support the success of a clinical trial by connecting the most engaged and dynamic patient groups with exciting research options.
It’s imperative that research listens to these community voices in order to learn about the inequalities that continue to exist, and use the insights to make research more patient-centric.