What I believe is that
something has changed. Many patients are not passive anymore. We connect with each other, we share our stories with one another, we build communities like this one at FAS.
I think that a lot of online allergists have good intentions ... guiding patients to official respected support groups ... trying to keep them away from bad internet info where anybody can say anything ... it's just that I don't see small groups like ours going away ... people are going to connect with those they feel a connection with ... I got something from this group that I didn't feel anywhere else.
Even though food allergy issues don't have a big impact on our life anymore, my mind keeps playing with certain topics ...
I adore that Six Biases paper by Trisha Greenhalgh ... remember all that google-bias hypothesis stuff, the "epistemic injustice", & this:
Herein lies a paradox: clinician-researchers are building an experimental science of how they can intervene in patients’ illnesses [84], while patients themselves are building collaborative communities aimed at supporting and informing one another [80–83]. Hence, EBM’s accumulating body of (explicit, research-based) knowledge and the (informal, tacit, and socially shared) knowledge actually being used by people managing their condition are developing separately rather than in dialogue with one another.
This. So much.
If I were an academic, this is the paper that I would have written ... I have experienced so much of what she wrote about. To me, this is where the exciting stuff is at ... that gap, the potential for better integrating the scientific literature and the unique knowledge that groups like ours hold. As you may be able to tell, my efforts to fully retire Links aren't going as well as I had hoped ... but I don't know where I really belong now ... these things are not so much food allergy issues ... it's like my FA experiences are kind of a gateway drug to larger, more general patient issues ... anyway, I'm getting sidetracked ... not so much a topic for a food allergy support board.
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Getting back to the OFC issue ...
With that KFA webinar, I had actually talked to Lynda on Twitter beforehand and mentioned that I was concerned about this issue of reacting after a passed challenge. I really appreciated that she made sure to bring up the issue to the doc. I felt happy to be communicating with her, to be working together, I felt "heard" unlike with a previous KFA webinar where they didn't have time to ask a question of mine.
After I heard the doc's response on the webinar to the question about reacting after a pass, I didn't raise the issue with her ... I guess I was a bit advocacied out (yeah, probably not a word).
Just a couple of days ago, I listened to the FARE webinar ... there, I did not ask about that issue - others did. The doc, for the most part did a great job, but what he said about this issue really rubbed me the wrong way ... obviously, I have some personal emotional baggage, so maybe I'm more sensitive?
What I do think, though, is that true patient engagement beyond tokenism would allow patients to talk back ... to say that we disagree with what was said at FARE & KFA ... to have our feedback considered ... and if it is found to have merit according to their medical board, to have the wording in the webinars improved.
During our last appt, our GI doc told me I should be a scientist ... had to laugh a little to myself ... see what Links has done to me? Anyway ... science ... papers are improved, sometimes retracted. Even though for the most part we are lay people, not experts ... true patient engagement, I think, requires what we say to be evaluated on its merit. This seems to be something that is very difficult for many experts to do.
You know, now that I understand the Google-mom issue, I sometimes have fun with it. I finally got around to my own pcp appt & I joked about googling patients & the doc jokes that the first step is admitting I have a problem.
Before understanding the Google issue better ... I didn't get it ... why were docs acting strangely if I mentioned internet knowledge? I remember a few years back, my former dentist was telling me local honey was good for treating allergies ... of course I tell him how some of the online allergists say that this is a myth ... can you just say the.smile.disappeared.immediately.from.his.face. Oh gosh, I could have some real fun with this Google-patient stuff if I were a researcher. Sidetracked again. Told you - convoluted.
I think it's the same kind of thing when groups like FAS "challenge" the expert narrative ... whether docs, lawyers, etc. - they often seem to have a hard time accepting that what we do or say legitimately has (or might have) value and should be taken seriously, or at least considered.
Can't help but think of the movie Titanic ... "It lets us know where we rank in the scheme of things".