• by Elizabeth Elfenbein , Columnist, February 3, 2017

We live in a patient-empowered world. People understand their healthcare challenges like never before. They become mini-experts during their journey to getting diagnosed. Yet, once a patient arrives at their diagnosis, they reach an inflection point and are suddenly alone with their experience. That’s where communities come in.

Shared experiences empower individuals and communities

Advocacy groups and communities for all kinds of disease states have the ability to ignite an individual and the greater community. And when we refer to communities, we’re referring to patients with a specific disease, the healthcare professionals who care for and treat them, and the caregivers who support them.

The power of these communities to help build understanding and awareness about a particular disease, educate, and bring together a group of people who are going through a shared experience is unbelievable. It has the ability to drive a cause and change behavior by getting people to fight for their health and their life. It has the power to effect industry change with research that attempts to find a cure, and it also has the potential to change legislation.

Communities are personal and they’re powerful

Communities can accomplish so many things: giving patients a voice, making people feel heard, making patients feel understood, educating a larger group, and even destigmatizing a condition or disease. They can make a patient feel whole after literally feeling halved.

One advocacy community that gets right to the core of this issue is SARDAA (Schizophrenia and Related Disorders Alliance of America) with their “Hearing Voices of Support” social platform. Schizophrenia is a chronic, severe, and disabling brain disorder. People with schizophrenia may hear voices that other people don’t hear. But their voices and the voices of people in their lives are rarely heard. It’s a massive burden, not only for the people diagnosed but also for the people who care for them. 

The stigma associated with schizophrenia exacerbates the condition because it leads to alienation and withdrawal into oneself, which only further perpetuates the disease. Hearing Voices of Support transforms the voices of schizophrenia into a positive call to “voice your support.”
It’s a movement to help show support for people affected by schizophrenia. It has ignited a community and has educated the larger one about needing to treat mental health problems like a medical condition not like a stigma.

By creating awareness around the lack of being heard, SARDAA ignited voices that could show support. This created a paradigm shift with people affected by schizophrenia. It not only recognized the unmet need of destigmatization, but it also answered it with the launch of a platform that leveraged social activation to drive to HearingVoicesofSupport.com to get the mental health community to stand up, take notice, and give a new voice to schizophrenia, one of support.

This community has helped shed light on a very misunderstood disease. At the core of the platform is a series of documentaries featuring people living with schizophrenia as well as their caregivers about their journey to coping with this debilitating disease. The call to action was to show your voice of support by sharing a video or your voice via words on their social platform at http://hearingvoicesofsupport.org/ and on their social pages at https://www.facebook.com/hearingvoicesofsupport/.

Social platforms along with grassroots events are smart ways to ignite a community during a disease awareness month, drive all stakeholders online with freshly created, curated, and syndicated content, and grow a community over time.

Causes and communities are inextricably woven together 

Causes and communities go hand in hand, whether it’s for a rare disease or a chronic lifelong condition. They drive shared experiences, awareness, and disease-related education that help the greater community truly understand the patient and caregiver journey, which has the power to ignite change. So, when thinking about how to reach a patient and their caregiver, think about how the community can help support them through their healthcare experience.