In the past 5 years I have learned a lot from the available on-line communities… the good, the bad and the ugly. No, I am not talking Clint Eastwood, although he may make an excellent moderator to any online support group.
Lets talk about the good of E- patient communities. They allow patients to connect with others and share their experiences. Communities give us the ability to open up dialogue for education. Patients learn complex medical jargon and treatment options of a given disease. They give support to those who need a listening ear. There are so many positive things about participating in online communities, but with the positives come some negatives. Online communities develop into trusting families. But what happens when there is a breach in the community?
Lets talk about the bad and the ugly of E- Patient Communities. What happens when the community you once trusted with your inner most thoughts and feelings becomes violated? When E-Patients find an online community they usually are at their most vulnerable point. Patients are scared and seeking help from their peers. They are putting their trust into sources that may be unknown. Transparency is so important in the social media world. Many online groups such as Yahoo or Goggle groups may be moderated, but who is behind the moderation? Here are some important questions to ask before joining a group.
- Is the person moderating transparent about who they are?
- What is their role as a moderator?
- Who are the patients in the group?
- Are these patients transparent?
I have seen firsthand how written words can lead to miscommunication and misunderstanding. In the end of these verbal wars it is the patient that suffers. Misguided advice can harm.
When you are sharing so much of your medical history and your personal experience it is understandable that you may want to stay anonymous. But when you are anonymous you are not a credible source. Do not be afraid of being credible. Being a credible e-patient does not mean you are an expert- but it does give your words integrity. However, think carefully about the medical information you divulge, as it becomes public knowledge once on the net.
E-patient communities have an obligation to be safe and transparent. Over the years I have turned Mayo’s Community Page and most currently Smart Patients. I found them to be safe and reliable resources. It is important for patients to understand how online communities work. I would suggest hanging out and listening and find out if that community is right for you. Online Communities are like families, you laugh and cry together and yes sometimes bicker. They can be a great resource for patients. Don’t be afraid to ask questions. Participate and be an active listener.
Updated 1/8/2014
