So, a small group of those former chat board members and I decided to build a supportive community to help people navigate through this time of often heightened uncertainty and anxiety, giving them a safe place to share their concerns, frustrations, and grief, and to ask questions of trained peer-educators. Our goal was always safety through evidence-based information and trauma-informed practices. Our volunteers and members are the essence of our community. They built it and continue to grow it and support each other!
Today, we have over 50,000 members in 115 countries. It’s a lot of hard and emotionally heavy work but we want to try to help people to have better experiences and outcomes than we had. I couldn’t trust my body and didn’t have the information to make informed decisions – a complete loss of autonomy and agency, even with the best care providers. No one should have to go through that alone and without information, so we keep doing the work until we have better options and experiences.
How do you ensure that the information provided through your platform is evidence-based and reliable?
Safety is our first priority. From inception, we have partnered with medical experts, scientists, and trusted health organizations to review the science we translate into patient-friendly, accessible explainers, the educational content we share on our platform, and our protocols for working with vulnerable populations. Our team includes clinicians, researchers, mental health professionals, high school science and elementary teachers, nurses, sociology and anthropology professors, public health professionals and communication experts, all of whom specialize in preeclampsia or have had preeclampsia. We read a ton of research and keep our members apprised of standards of care and best practices in the countries in which they reside.
What strategies have you found effective in raising awareness and educating people about preeclampsia within the community?
Storytelling is our greatest tool! Whether we are speaking with our members, care providers, researchers, institutions, industry representatives or politicians, the human experience is incredibly powerful. When you put a face and a name to statistics like, ‘80% of maternal deaths in the US are preventable’, it gives pause, and allows for reflection on the importance of the work of keeping mothers and babies healthy and safe.
We are also experts in helping clinicians, institutions, and researchers improve their practices and research by learning how to understand and work more effectively with patients. Collaboration with patients can increase the ability to secure grants and produce higher quality and more successful research.
What are some key challenges that preeclampsia survivors commonly face, and how does the community provide support to address them?
We have a unique perspective, given the tens of thousands of patients that are active with EndPreeclampsia every year. We proactively work to address key challenges identified from our vast community, with a particular focus on bridging communications gaps between patients and their providers.
For example, we provide evidence-based education to try to help patients know what they might expect, as well as help translating research and ‘medical speak’ into digestible information for patients with preeclampsia. In addition, we provide simple scripts for patients to better communicate within the medical system and advocate for themselves.
Our community of experienced patient advocates provides needed services that complement the medical care patients receive, including moral support, empathy, and strategies to help foster better communication, care, and outcomes.
Essentially, we are scaffolding for our members … providing a safe place for them to learn and grow while ensuring they have the tools to get their immediate needs met by their care providers. One of our key offerings is supporting our members with nearly 24/7/365 availability to answer their questions and guide them in their efforts to engage with their providers in real time.
The views and opinions expressed by members of Comanche Biopharma’s Patient Advisory Board in the ‘Preeclampsia Champions of Change Q&A Series’ may not necessarily reflect the views and opinions of the company.
