If you were an allergy researcher ...

[guess]

Funding exists for new research. Try NIH. The talent pool here is more than sufficient for good study design and adhering to ethical requirements.

[LinksEtc]

Funding exists for new research. Try NIH. The talent pool here is more than sufficient for good study design and adhering to ethical requirements.

No, no ...

I'm not up for such a thing.  I'm just throwing ideas around in an internet forum thread.

With a few of my threads, I feel like I'm running the last lap in a marathon, trying to wrap up certain projects and make sense of certain thoughts before getting to relax.

Have to concentrate on many things IRL, cut back on internet & allergy activity ... although I do really enjoy these things.

If I was younger and a little smarter, maybe I would have been an allergy researcher.   

[guess]

I'm going to challenge that thinking because mine was challenged on it last month. I was actually approached by a DOJ representative as I talked to what is in my mind a "real" researcher. Had no idea the DOJ person was in the room and was a little taken aback when I was encouraged to apply for funding. Unfortunately it wasn't civil rights so not applicable to LTFA.

There is a sufficient talent pool here of that I'm sure. Three full fledged university level researchers who know study design, population, IRB, chapter and verse of bias, faulty conclusions and the like. There are a sprinkling of stat number crunchers, and also a sprinkling of legal. If you wanted it could be largely qualitative with some light quants or use existing data on quants and do a qualitative to provide insight through context and explaining mechanisms. All of this I mean quality of life, etc., not the medical or pharmaceutical.

A careful design and delegation of tasks would make it manageable. You want something achievable, and ultimately useful. Dismantling of FSOS, calculation of total time and nutritional breakdown on treats over the course of a year. Designing a novel measure of quality of life, studying food allergy dads, measuring the responses anonymously from the school side of the equation, measuring how much they know, expectations. The last one may be a lot of help, IMO.

Or how about a measure of how much academic loss the average LTFA student is denied due to discrimination? Put it in numbers then contextualize it for why and how.

[CMdeux]

   COMPLETELY agree with that.

[LinksEtc]

Noooooo     but thank you that you would even suggest such a thing to me.  I love that you guys see value in what I do.   

Now, if FAS ever did form an org, you can bring me in as an assistant in the research, education (written material), & forms areas  ... give me a small, quiet room with lots of coffee & I'd be good to go.   

[LinksEtc]

Tweeted by @AcademicsSay

I don't suffer from overthinking, I enjoy it. Depending on the context and how you define enjoy and overthinking.

&

I often wonder if my work makes a difference. I also often wonder why I have so many pens in my bag.

&

Warning - you'll see a little language with this one.
pic.twitter.com/916cRv9ymq

[LinksEtc]

Tweeted by @SusannahFox


"Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious."
http://susannahfox.com/2011/05/25/peer-to-peer-healthcare-crazy-crazy-crazy-obvious/


I like her "wacko" to "obvious" new idea scale.

"enable patient communities to convert anecdotes into structured self-experiments that apply to their daily lives."

[ajasfolks2]

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

As I look back at the years that many of us have been "together" (here, there, wherever) I have truly come to appreciate the diverse backgrounds . . . the domains . . . from which we came and brought together our thoughts, ideas, biases, tenacity, and curiosity.

We push the boundaries, push for change, and have been willing to ponder new ideas and ways of looking at and approaching diagnoses, treatments, "comfort zones", advocacy, and coping.

[ajasfolks2]

Noooooo     but thank you that you would even suggest such a thing to me.  I love that you guys see value in what I do.   

Now, if FAS ever did form an org, you can bring me in as an assistant in the research, education (written material), & forms areas  ... give me a small, quiet room with lots of coffee & I'd be good to go.   

Links, I'd make your pot of coffee every day.  With a smile.   

[LinksEtc]

Links, I'd make your pot of coffee every day.  With a smile.   

[LinksEtc]

Any good researcher needs good search skills.   


Tweeted by @helenbevan

"10 Things You Probably Didn't Know You Could Do With #Twitter Search"
http://linkis.com/lnkd.in/wexNg


---------------------------------------


Tweeted by @RANDCorporation

"When and How Are We Engaging Stakeholders in Health Care Research?"
http://www.rand.org/pubs/research_briefs/RB9820.html?utm_source=t.co&utm_medium=rand_social

Stakeholder engagement in research refers to the involvement of patients, doctors, payers, and other decisionmakers, from the early stages of setting priorities and forming research questions through the final stages of implementing and disseminating results. Many advocates for patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) see collaboration between researchers and stakeholders as the best way to generate evidence that is relevant, responsive, and trustworthy, and thus likely to be put into practice.

[LinksEtc]

Tweeted by @DionneLew


'I don't know'. Using uncertainty as a platform for growth #self #leadership
http://linkis.com/disq.us/IXUlw

When 'leadership' is confused with 'the need to know everything' it can lead to cultures of bluff where people feel it's more important to give a response (including a wrong one) than acknowledge doubt.

It's important in the light of the above to keep an open mind and find ways to include the quiet, considered and reluctant (and not just the loudest or most confident) in decision-making.

[LinksEtc]

Tweeted by @ePatientDave

"How early should patient voices be heard in the research process?"
http://www.epatientdave.com/2014/09/28/how-early-should-patient-voices-be-heard-in-the-research-process/

The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process - after someone has decided what should be studied, and designed a trial to do that.

[LinksEtc]

Tweeted by @subatomicdoc

The Power of "I Don't Know"
http://www.edutopia.org/blog/power-i-dont-know-heather-wolpert-gawron?utm_content=bufferfc6ec&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Google doesn't make people stupid, as a recent article once claimed. It just does what you ask it to, no more, no less. The challenge, then, is to think about how to be specific enough in your search that you make the search engine do the work for you.

[LinksEtc]

Tweeted by @charlesornstein

"Design Power: Patients Play Researchers in Drug Trials"
http://online.wsj.com/articles/design-power-patients-play-researchers-in-drug-trials-1412034067

In a trial of a potential prostate-cancer drug getting underway at the Icahn School of Medicine at Mount Sinai in New York, doctors had planned to ask patients periodically about side effects such as nausea. But patient input convinced them to ask additional questions, including how many days patients felt well enough to go to work.

A driving force in the effort to make patients equal partners in designing clinical trials is a nonprofit group called the Patient-Centered Outcomes Research Institute, or PCORI, which was established by the federal Affordable Care Act.