If you were an allergy researcher ...

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I'm looking at this, and I'm not sure where to start.  Will try to respond in bits & pieces ... probably won't get through this tonight.

I'm arguing with myself over this topic in my mind.

Great quote tweeted by @parisreview

“I can write an article only when I agree with myself one hundred percent, which is not my normal condition.”—Amos Oz

This is how I feel about this thread and this one
Docs helping patients to surf the internet


I'm also arguing with myself over how much to post in these threads because there are many slippery slopes ... if it were just you & me reading/posting, I wouldn't worry about it .....

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A lot of this thread is just lighthearted fun & ...

maybe a lurking allergist or 2 might find something that inspires  .....

but it does have a serious side ... What is our "place" as patients/caregivers?  Is there really a commitment to patient engagement in health care?  If a patient sees a potential solution to a general problem, if we have an idea, if we have a legitimate criticism or concern about an expert study or expert advice .... what is the best way to handle that? 

If in a support group, we start seeing what appears to be potential patterns in the anecdotes, should we not think about this because we are not an expert? 

If we see official positions from FA experts that go against our experience ... is there a way to let them know that we may be an outlier ... maybe their theory needs adjusting ... hey, study me!?!?

If somebody like CM or TT's husband has expert knowledge in another field that would change the way allergists look at things, is there a way to form collaborations?

Credentials are hugely important ... they matter greatly ... but are they the only way to get a seat at the table of discussion?

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We've (as a group) often had concerns about ideas generated by patients/caregivers or other non-experts.  Ex ...

App for Parents of Kids with Severe Allergies

&

There were concerns from FAS members about AllergyEats (I can't help seeing parallels with the topic of the reliability of doctor rating sites).  That tool/service, when used with FARE restaurant certification, makes me a bit more comfortable.


There is a huge misinformation & pseudoscience problem ....
Food Allergies: Facts, Myths, and Pseudoscience

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Then there is the issue of conflicts of interest.  Say a patient group wants better stats on the true frequency of all allergens in the USA ... this is not a rocket science concept (or believe me - I would not be able to understand it).  Yes, the expert would have the bigger role in designing the actual study ... but should a group of patients not be able to raise their own funds if an expert agrees to study something near & dear to their heart?

Some of the allergy orgs have ties to BigFood ... is it possible that this would impact how research $$$ is spent?

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to be continued another day     .....

[CMdeux]

All stuff that I think about regularly, too.   

Multiple perspectives are generally a good thing-- as long as they don't compromise care/management in a timely fashion, YK?

I often consider this question, too-- as parents and patients with a life-altering, life-threatening diagnosis that requires ongoing daily management-- which, by and large, is a matter of a continuous string of judgment calls one after another-- eventually, that often gives us insights that even our allergists (no matter how expert) can't touch in THAT particular domain.

I'm not sure what to call such expertise, though, or how to measure it or credential such things.  Clearly they matter-- as any allergist or parent knows.  We do get better at living with LTFA with time, and it has a lot to do with experience. 

If only there were a way to include that very legitimate seat at the table.     All too often schools assume that we are not experts, when the reality is that a parent usually IS the "expert" on keeping his/her child away from the emergency room by the time a school has cause to interact with us.  Basically, it boggles my mind that any classroom teacher would not listen and heed a parent that looks at a series of events or planned events and says "Man, I sure wouldn't do that-- WAY out of my comfort zone."  There is frequently a good reason for that comfort zone.  At the very least, shouldn't the question be; "Why do you say that?" 

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the problem is that without the background to determine whether or not ideas (whether our own or those that we find appealing when promoted by others) are even plausible, we can get into the weeds pretty quickly.

It takes a VERY intelligent and secure clinician/researcher to actually explain why something is wrong/impossible/implausible, however, and that is time that (mostly) is better spent on doing research or doctoring-- because there are just not enough of those people in the world. 

Unfortunately, that leaves a gap

I definitely do NOT have the understanding of atopy that our allergist does

I really do agree with this.  That's the reason I tried to ask our allergists about some of my online ideas ... I knew my limits ...

but at least with one of them, I think that I may have run into "google-mom bias"   



maybe docs are so used to seeing this type of mom ...

perhaps I should have come with a warning   


Re: Docs helping patients to surf the internet

Ok ... really, I have some empathy for docs with this whole internet issue ...

"Going House of Cards on anti-vaxxers: Why we need Frank Underwood."
http://www.kevinmd.com/blog/2014/06/going-house-cards-anti-vaxxers-need-frank-underwood.html

I didn't appreciate how absurd the whole thing might appear.

Health care is not a game, but there do appear to be some unspoken rules that I did not understand at the time.


I'm taking it slower with Dr-FA-Yoda ... I know she has the knowledge to keep me out of the weeds ... I have some hope that at some point that relationship will be such that I can be myself without worrying about offending or annoying.

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So while this stuff is important, it's also important (IMO) for us as patients to know when the answer is "I don't know" versus "Nobody (yet) knows," versus "the answer isn't at all clear at the moment, but here are some ideas..."

Yes.   

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This is why lay review is often so frustrating.  Picking up the vocabulary isn't always enough to provide a true framework of understanding (assuming that a consensus exists).   There's no basis for evaluating the basic experimental design to tease apart those research articles which are bad/flawed, versus those that are good or well-considered and thorough.   That's critical, because the validity of the conclusions rests upon that distinction-- it's not how WIDELY READ a paper is, nor how popular with the press. 

What I find frustrating as a lay person is that if I base what I say to a doc or an allergy org on sound info, good sources ... they often still can't "hear" what is being said, they won't really look at the info. ... Like when I tried to convince a doc that hummus had enough sesame protein to cause a reaction ... I knew that I was right on this issue ... I had the info to prove it ... I couldn't convince her ... and she was a nice doc, we got along fine.  Sometimes I think the health community is more comfortable with patients/caregivers who don't have a good health care literacy.  When we start to know what we are talking about, it kinda freaks some of them out imo.


My idea of a great research setup would in no way be based on popularity.  It would be all about quality & potential & evidence.  I do believe in a Ratatouille type wisdom that a great idea can come from anywhere, including from a patient/caregiver.  How to best capture and develop those valuable patient ideas in the sea of patient pseudoscience is a really interesting question to me.  Even expert great ideas could sometimes use a bit of patient perspective tweeting tweaking imo.


Sometimes I wonder if the professional health community thinks that if they ignore the tough questions from FASer forum types, then we will fade away .... I think the opposite is probably true ... if they want to quiet forum users down, they should consider truly engaging, trying to address honestly and transparently our questions and concerns.  If more patient needs were met, I think more online activity might turn to more "acceptable" activities like sharing recipes and giving each other virtual hugs.



ETA - meant to say tweaking, not tweeting ... that's funny ... 

[CMdeux]

When we start to know what we are talking about, it kinda freaks some of them out imo.



YES!!!

 

And I think that everyone deserves a clinician who is comfortable as a partner, rather than as a godlike, patronizing Figure of Absolute Authority.  Not all clinicians are-- and far too few clinicians have the time and inclination to really keep fully up to date on current practice parameters even within their own narrow specialties, nevermind some of the more esoteric or unusual (rare) things that we may present to them.

This places patients in an impossible position, actually.  Do we:

a) keep ourselves informed to the best of our ability?  this means keeping up with AAAAI meeting abstracts, patient-care guidelines as they are published, etc. 

b) follow the (sometimes out of date) recommendations, well-meant, of our physicians without challenging their authority?

If you're an informed patient, eventually that conundrum is going to present itself.  A good clinician is happy to keep learning-- and the really stellar ones are happy to learn even from patients!  Heaven knows where they find time, truthfully, but they do keep current on research in the field because they love their work and the field.  But a mediocre or just "competent" physician may not.  That person may still be a pretty good doctor-- just not for the ends of the bell curve in the specialty.... which... they may not even recognize since they've not kept current. 

I've seen that with allergists.  Ours knows that DD isn't the run-of-the-mill patient.  Not even in her cohort.  A less stellar physician could, in contrast, assume that we aren't really living what we are, and that we are just "not compliant" or "over-reactive."
 

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Multiple perspectives are generally a good thing-- as long as they don't compromise care/management in a timely fashion, YK?

For complicated ideas, I don't think there is usually enough time to discuss fully at doc appts ... the focus and questions need to be mostly regarding the patient ... not far off theoretical stuff.  Plus, I have realized that although I am willing to stick my own neck out in many situations and push hard ... I am not willing to risk my dd's health by being too challenging on non-patient issues, potentially damaging the doc-patient relationship.  I would have to be given an invitation of sorts that the doc wanted that kind of relationship, that it is ok to push things as I can do at FAS.  As long as our docs continue to take great care of dd, that is all I have a right to ask of them, & I will remain very happy with all of them.




Tweeted by @helenbevan

"Inside the mind of the workplace radical"
http://linkis.com/adigaskell.org/2014/viFkq

It found that when deciding on whether to stick our heads above the parapet

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far too few clinicians have the time and inclination to really keep fully up to date on current practice parameters even within their own narrow specialties, nevermind some of the more esoteric or unusual (rare) things that we may present to them.

This places patients in an impossible position, actually.  Do we:

a) keep ourselves informed to the best of our ability?  this means keeping up with AAAAI meeting abstracts, patient-care guidelines as they are published, etc. 

b) follow the (sometimes out of date) recommendations, well-meant, of our physicians without challenging their authority?

If you're an informed patient, eventually that conundrum is going to present itself.

Great points made in that whole post CM.


ok ... this is one of those slippery slopes so let me try to be very careful with how I word this.


Doctors are the experts ... if you have a medical problem, get yourself to a good physician ASAP ... if you still are having doubts or problems, get yourself to another physician for a second opinion.  Do not try to just get your info from google or a support group.

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Do not do this!  (@zdoggmd)

"I'm not big on thrombopoiesis"
https://m.youtube.com/watch?v=-rwcIRfHcAE&feature=youtu.be&a=

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ok, this is stuff that I usually only whisper to myself because I don't want to lead others astray.


My google skills and/or internet forum activity has allowed me to recognize questionable medical advice quite a few times with quite a few different doctors from multiple specialties.  This type of thing is hardly ever acknowledged by those who are concerned about patients going on the internet.

It reminds me of "The Gambler" song ... sometimes you have to know how to play "the game", sometimes you have to know when to walk/run to another doc, at least concerning a specific issue.

What has allowed me to do this?  I'm not really that smart ... I know that the docs know a lot more medical info than me ... but the thing is, I often have more invested in my family's health than a doc that I just met and who might seem distracted or rushed & I have time to do a specific search on a specific problem. 

If you ask me to come up with solutions to the Israeli-Palestinian conflict or find a cure for cancer ... I do not have the ability.  However, if I have a lump under my ear that's been there a while and my primary is telling me not to worry about it ... but I find info from good sources on the internet that are telling me that maybe I should be concerned .... then I would diplomatically tell the primary that I would feel more comfortable seeing an ENT ... which is what I did years ago.

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So, DO NOT diagnose yourself, but do educate yourself & get yourself to the appropriate medical doctor.

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I'm not going to try to fully understand this, but I thought some of you science folks might like it ... although I might be able to apply it to my "google-mom bias" hypothesis     


Tweeted by @tasneemzhusain

"Belief, bias and Bayes"
http://www.theguardian.com/science/life-and-physics/2014/sep/28/belief-bias-and-bayes?CMP=twt_gu

For example, as a writer and head of a physics department, I get quite a few unsolicited communications about new theories of physics, often involving Einstein having been wrong, or the Higgs boson actually being a macaroon or something. I have a prior bias here, based on the enormous amount of existing evidence.

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Tweeted by @helenbevan

"Where Original Ideas Come From"
http://linkis.com/www.digitaltonto.com/MOd8C

Thomas Kuhn, who I mentioned above, became famous for his concept of paradigm shifts. He pointed out that even great scientists get stuck in a particular way of thinking about things, even when their theories no longer match established facts.  That’s why it is usually an outsider—or a new generation—that tends to break new ground.

Truly original ideas rarely come from diligently working within one field, but rather from synthesizing across domains.

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Tweeted by @tasneemzhusain

"How To Waste Time Properly
The right distractions boost creativity."

http://nautil.us/issue/16/nothingness/how-to-waste-time-properly?utm_source=tss&utm_medium=desktop&utm_campaign=linkfrom_feature

Finally, break time—the last unmanaged part of the workday—will no longer be a waste of time.