Helping Cancer Patients Navigate the Journey Based on Experience

Rochelle Prosser is the founder and president of Orchid Healthcare Solutions, the company she created to consolidate cancer treatment information and improve access to that information. We discussed the difficulties in navigating healthcare systems and the importance of having comprehensive, scientifically-driven resources for cancer patients and caregivers.Rochelle is a neurotrauma critical care nurse with 30 years of experience. She has had her own journey in healthcare and felt the impact of cancer on both her husband ( a two-time survivor) and young daughter. She described the challenges of a family trying to stay together and making decisions for a daughter who was only beginning to experience life when she was diagnosed with a rare cancer at the age of four. She had this arbitrary, completely rare brain cancer and it took nine years to figure it out for her to find survival. And that's a long time. Most people can't deal with that. Marriages are lost, finances are ruined, but we remained intact.Although her daughter was put into hospice five times, Rochelle never gave up advocating for her. I was curious about how you persuade a doctor to try something new when your child is already in end-of-life care. Her advice was to try to always be collaborative. Doctors and nurses want to help. There is value in being persistent, but it’s also important to listen. Not every treatment is the right one. If the doctor says no, there is likely a reason. But that doesn’t mean you stop trying:And so I had to find a way. to politely and effectively navigate and communicate so that I could get to that next cure, to that next option. For me, 50 percent chance of working for two years until the next treatment was a better option than 10 percent chance on a conventional treatment.Thanks for reading cc: Life Science! Subscribe for free to receive new posts and support my work.Either way, I appreciate you spending time here.Based on genomic analysis, her daughter’s tumor was a mosaic of glioblastoma and DIPG (diffuse intrinsic pontine glioma). Imagine how complicated that sounds even to a healthcare professional, let alone anyone else. In addition to advocating for her daughter, Rochelle decided she would try to help others in similar situations.I felt the need to intercede in that space intentionally with what I knew and how to navigate. So this is why I started Orchid Healthcare Solutions. I created a cancer treatment library that houses all cancer treatments from soup to nuts. Everything that's out there that is scientifically driven in one place. One of the biggest pain points, being on the provider side, but also on the recipient and caregiver side that I found was there wasn't a place that had a unified place to go.It was really difficult to navigate to get information just to find out that knowledge. And I said, if there was one way that I could share my knowledge was to consolidate that, remove the silos so that you have effective and appropriate information sharing, and that will help vulnerable populations. That will increase knowledge and awareness and increase participation in clinical trials.Because genomics was so important in her daughter’s case, Rochelle feels strongly about the need for diversity in clinical trials to understand how treatments affect different populations. Representation in those trials is critical to advance medical science that benefits everyone. At the same time, she is very clear about the importance of informed consent and the conditions around consent for participation. Bottom line - we need more people to participate AND understand their rights regarding their tissues and data. That’s how we get to the end goal of more diversity and better understanding of which treatments will work for different populations.That is the only way to move us forward. We all must come together because where it works or is expressed in one, it doesn't work (in another), but we need to find out why. And when you find out why, it is that nuance of why that then can put protection and then advancement and an improvement in care overall for all of us. Your deepest insights are your best branding. I’d love to help you share them. Chat with me about custom content for your life science brand. Or visit my website. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit cclifescience.substack.com