Recently on Twitter, there has been chatter about the “don’t Google it” advice given to patients and the role of patient narratives in healthcare related to chronic and critical illness.
One of the challenges of having physicians “Direct those patients to solid information you trust, which will help to inform future doctor-patient conversations” (Carolyn Thomas), is that we are again asking the physicians who are not living with the disease to decide which sources are trustworthy. They are still not in a position to know what lived experience resources are trustworthy – that is something I believe only a patient could know.
I think we are ready for a professionalization of peer-to-peer healthcare. We are ready to find experts who live with the disease and include them as part of the healthcare system. Certify them. Pay them. Professionalize the role of providing support with lived-experience where the primary qualification is to have that lived experience.
In Carolyn’s post, she mentioned Nancy Stordahl’s blog Nancy’s Point as a great resource for breast cancer patients. I couldn’t agree more. When I was ready to start reading blogs – which wasn’t right away – initially I wrote but didn’t read, instead my husband did the reading and finding of great blogs – Nancy’s blog was one that I read regularly. It helped me know that I was not alone in my experiences – but also helped me learn a lot about what I might come to expect. Another great blog is Marie Ennis O’Connor’s Journeying Beyond Breast Cancer.
In addition to blogs, I also found a lot of support in Facebook Groups. I still find support in Facebook groups. When I thought I wasn’t going to reconstruct I joined a group called Flat and Fabulous. That was an amazing community of women supporting one another. I ended up choosing reconstruction, at which time I changed to a different Facebook group – one that supported others going through the same type of reconstruction. For me, the Facebook groups were a place to reach out and get an immediate question to whether a symptom was “normal”, something I could wait and tell my doc at the next appointment, or something that I should call immediately about. Since the group has an international presence, I could get answers to my questions at any time of day. That goes a long way to reducing anxiety and ensuring that I am getting the best healthcare I can.
I go back to my point above. I think it is time that we start looking at professional ePatients – those with lived experience who choose to be guides and advocates for others living with critical or chronic illness. We are a huge untapped resource that should be part of the healthcare system.
The professionalization of this role would also help to address the income gap for those with critical and chronic illness. Not everyone wants to be a professional ePatient – but there are people who do. People who live with there diagnosis, share their experiences, and learn a heck of a lot about the disease. They are experts. It is time we started including them into the system as the experts that they are.
Do you think we should look at creating a professional ePatient role that is embedded within the healthcare system? What would skills and competencies would that person need to have?
Feature image by Christina Morillo via Pexels.