Right now many large health organizations have a Facebook page, as do countless foundations and many physicians. Additionally, patients have formed online support communities within Facebook and elsewhere. The problem with some of these "patient only" communities is that there is a whole lot of drama and negativity. The biggest problem though, in my opinion, is that information takes on a life of its own and inaccuracies become "fact", creating confusion and misunderstanding. There is plenty of communication by patients and physicians, but there is a lack of communication between patients and physicians. Physicians are often viewed at the bad guy by patients, and patients as non-compliant and non-adherent by physicians. When the lines of communication are simplified and made more clear, everyone begins to view the patient-physician relationship as a partnership.
Facebook is a place where we can share honest information with a large community of people and conversations can take place benefiting everyone. Patients who may not be forward or comfortable enough to ask questions to their doctors could find answers to things they want to know in discussions they could see between other patients and physicians from our clinic. And more verbal patients (like myself) can ask questions or prompt conversations on topics that they have questions about and the whole community gets to see that feedback. Additionally, tips and tricks that are safe and approved by our clinic could be shared, providing value to patients. We can announce clinical trials, education days, fundraising events the CF Foundation or hospital might be having. People who follow our Facebook feed could see what the PIQI group is working on and it could spark more interest in participation. I think Facebook is a good way to show patients that we are team. We truly want to help and are trying to facilitate that in any way we can. Having our own page allows us to create our social media presence and set the tone for how we want people to perceive us. Right now, the other CF pages are setting that tone for us, down talking specific hospitals or physicians for what they do or don't do based on a single experience that once person might have had. We should be be able to tell people from the horses mouth what we do and what we recommend and support and what we do not.
And that's why I think we need our own Facebook page!