Making the private public – Why we choose to blog about illness #VCePt

Over the last week and a half I’ve spent a lot of time meeting with people regarding my PhD research – it was one of the reasons I went to Ottawa and stayed as long as I did. Overall it was a very productive trip.

One of my learnings from the trip was that I really need to think about my research as something that is inherently separate from what I do as a blogger and Virtually Connecting founder. I need to be able to continue doing the work I do in these areas. I need to be allowed to do it without the risk of breaching ethics requirements.

A new Virtually Connecting project that myself and Susan Adams (@edtechinsight) launched was discussions relating to the ePatient space. I’m an insider in this space. I identify as a blogger in this space. On an aside, I had been looking for a different term than “illness blogger”, and “wellness blogging” is a totally different thing. I discovered that some authors are using the term “health blogger” and I will probably choose to adopt that term.

Since I’m very inside the health blogging community, I know a lot of bloggers. This has meant that I can draw upon my blogger friends to have a conversation around why we chose to blog and why we share such personal details on the public internet. These questions were influenced by a session I attended at the #IHSRC35 conference last week. Researchers were trying to guess why we share what we do, but they were not inside the community so they left the session perplexed rather than with answers. This posed a great opportunity for Virtually Connecting ePatients (#VCePt) to provide a dialog that will be archived on the public internet and available for use by researchers (and anyone else who might be interested).

If you are interested in watching or joining the session, links are available from the Virtually Connecting event announcement.

I’m also looking for ideas about future topics for Virtually Connecting ePatient discussions. I’m thinking about using something like the Mozilla Web Literacy framework as a way to inspire questions relating to digital health literacies.

What questions would you like to see addressed in Virtually Connecting ePatient discussions? How do we break the silos so that we are not just patients talk to patients – but rather we are having conversation between patients, healthcare providers, and researchers?

1 Comment

  1. This sounds interesting but I’ve come to the conclusion that sick people are non-persons and not be talked to by the medical profession. In addition, it seems all the patient involvement groups are closed off to sickies, or at least unresponsive. As a result, my blogs are going to shift to an expression of that part of me that the medical system has smashed–my self.

    Here in Alberta there are all sorts of patient inclusion utilities but no one talks about how it feels to be a “bad patient.” Someone who won’t surrender themselves to the cruelty and indifferent care that passes for medicine.

    My most recent blog includes the actual letter between my cardiac surgeon and “my” cardiologist. As unknown person to the constantly changing medicos I’m sent to for care, it seemed useful to put some part of me on the internet as a marker that I exist.

    Be interesting to see how medicos respond to those of us who consider ourselves disappeared.

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