Social media and patient engagement – #medx

Recently, I noticed a transition in my face-to-face support group – in that I’ve transition from the newbie going through treatment to the experienced breast cancer patient who can answer various questions about chemotherapy. A friend sent me a book (which I recommend ‘Crazy Sexy Cancer Tips‘), which has some great advice for those with cancer and those who have loved ones with cancer (I’d skip over the fluff on diet though – I hate how people can get preachy in an area where we really don’t have a lot of meaningful research). I realized that I had some tips to contribute, so I created a couple of pages with tips (see the new menu – with tips for newly diagnosed, and tips for chemotherapy). These are works-in-progress.

OK, so back to the point of this post – I have been reflecting on social media and the type of information I get from social media. I use social media to get a sense of the ‘lived experience’ of a given treatment. When I reach out and ask, I receive experiences from others as well as a boat load of advice. This information is often very useful in helping me better gauge what to expect, but also in helping me ask questions of my healthcare team. This in-turn reminds me of one of the best pieces of advice that I received early on ‘decide who you want to trust‘. I’ve decided that I trust my oncologist and my surgeon. This means that I can hear advice from various outlets (social media, friends, support groups, etc) and use that information to pose questions to my care team. From there, I can then remind myself who I trust, and take their advice.

I find myself regularly having to remind myself that I’ve decided that I trust my oncologist and surgeon – because information from social media can be very disproportionate. What do I mean by disproportionate? When you ask about potential complications with surgery, you are going to hear a lot about complications. You won’t truly understand how rare some of those complications are – because the people drawn to social media to share their experiences aren’t typically people who have had ideal experience (those people don’t feel like they have anything to share) – so a disproportionate amount of what is shared is the exception to the rule rather than rule itself (at least that is what I believe – might need to do a study to test this hypothesis). My point is, that my surgeon and oncologist provide an opinion that is grounded in evidence and experience – where social media provides anecdotal evidence. As an engaged patient, both are important. I need the social media information to appreciate the lived experience (before it is my experience) and I need the evidenced-based advice that my specialists provide. I do, however, think that if I had not decided who to trust, I’d have a more difficult time navigating my way through treatment.

  • Becky

One Comment

  • Totally agree with the picking who to trust idea. Sadly my trust in the oncologist herself and her equal at the satellite clinic where I’m given my chemo is broken. Fortunately, the RNs that administer my infusions are approachable. This fits my nature perfectly as I learned through bad experience to mistrust “experts.”

    This sounds dysfunctional but the fact is heart failure is going to get me long before cancer. So I can “afford” to let the oncologists play their games.

    On the other hand, the cancer has caught the interest of my Cardiologist who’s been with me through two heart failures and is getting ready for soon to happen #3. She knows my history and why I struggle with experts without taking it personally.

    Same with my family doctor, trust and honesty prevail. Maybe building relationships with the cancer people would be useful? Not really.

    I’ll have to look at the tips you’ve written. You might need a few more years in California to acclimatize to the weird diets:-)

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