Precision social media support – an #epatient example

In early January, I joined Christopher at Just Talking for a podcast. One of the topics that came up during the podcast was the role of social media (and in my case Facebook groups) as patient support when going through illness.

I spoke of my experience with Facebook groups relating to my choices are breast cancer surgery. Early in my treatment I was certain that I was not going to opt for reconstruction. I joined this awesome Facebook group called Flat and Fabulous. The women in it were a constant source of support, not just around the decision to go without reconstruction, but also on other aspects of learning to live with breast cancer and managing side effects of chemotherapy. I know that at any time of day I could post a message and I’d receive encouraging and informative responses.

When I decided that I would opt for reconstruction after all, I had to leave the flat and fabulous group. Their guidelines were clear – they were there to support those who chose not to reconstruct. They were not making any judgement or value statements, just that they have a clear niche and want to keep it that way. And so, I left the group, and found another group – this time, the group I sought out was one that supported the specific type of reconstruction surgery I was having. This too proved to be very valuable to me, as I had 24/7 access to women who knew what I was going through. When I had a weird symptom I could ask, is this normal? Is this something I should call my doctor about immediately? or is it something that can wait until the next appointment? The group helped me prepare for my surgery and helped me be better prepared for what I would be experiencing in the aftermath of the surgery – all the little (and not so little) things the doctors forget to tell you.

What is interesting about this is that I was about to find Facebook groups that aligned with where I was in treatment, and that as my treatment changed, I was able to find groups that aligned with those changes.

In the pod cast, Christopher mentioned a connection to the concept behind precision medicine. The idea being that rather than giving one treatment for everyone, that we use some characteristic (in the case of precision medicine it is molecular makeup of tumors) to determine treatment. So, it is isn’t a one-size-fits-all, but rather a more personalized approach. In some ways, social media can provide this. In my case, it was with Facebook groups – there are so many different Facebook groups around the different areas and treatments for breast cancer that I was able to move from one group to the next when I needed to. I could find one or more groups that supported me in the stage / phase that I was in. When the group no longer aligned with my needs (or treatment choices), I was able to find another group that worked better for me.

It makes me wonder if others who use social media for health support, if they do the same thing? Is the movement from one group to the next common?

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