Showing posts with label Health science. Show all posts
Showing posts with label Health science. Show all posts

Friday, July 25, 2025

Catch-22 in Biomedicine: Where Innovation Goes to Die

Welcome to the biomedical field, where the real disease is the system, and the only approved cure is being part of the club.

Let’s start with a fun little circle, a biomedical version of a hamster wheel — Catch-22 with a white coat and a PubMed badge. Here’s how it works:  

  1. To Be Read, You Must Be Indexed.
    No matter how groundbreaking, disruptive, or life-saving your research is, it won’t exist in the eyes of the AI models and policymakers, unless it’s indexed in PubMed. That’s the velvet rope to the scientific VIP lounge.

  2. To Be Indexed, You Must Be Published in a Journal That’s... You Know, PubMed-Worthy.
    And to get into one of those? You need money. Either:

    • Pay the journal a small fortune (ranging from $2,000 to “you’re gonna need a second mortgage”), or

    • Be part of The Club™ - that elite group of insiders who don’t need to pay because they’ve been publishing in the same journals since Watson and Crick shared a sandwich.

  3. Oh, You Did Something Novel? Sorry, That’s Not on the Approved Menu.
    Maybe you developed a cost-saving, patient-driven clinical trial. Fantastic! But if it wasn’t:

    • Funded by Big Pharma, or

    • Backed by the NIH and conducted by a prestige university with ivy-covered walls,
      …then guess what? It doesn’t count. Reviewers will call it “methodologically unsound,” Editors will say "it's not interesting to our readers", which is code for “you didn’t buy the right ticket.”

  4. Citations: The Scientific Echo Chamber
    “You cite me, I cite you, we all cite the same five people we've known since grad school.”
    If your work isn’t already blessed by the existing canon, if it dares to question current paradigms, or (God forbid) it talks about a topic not discussed by the establishment, it’s tossed into the "Thanks but no thanks" pile.

    Citations are the currency of academia. But like real currency, they tend to trickle upward.


Exhibit A: The Case of PATM

Ever heard of People Are Allergic to Me (PATM)? No? Neither has most of PubMed, and certainly not your favorite dermatology AI (that will also tell you it's all in your head).

There was a peer-reviewed paper in JMIR Dermatology showing a microbial connection to PATM. It should’ve led to more interest in this condition. 
But alas, JMIR Derm isn’t indexed in PubMed - a technicality that renders the findings invisible (unless the work was funded by NIH). Not because they’re invalid. Just… you know… they weren’t invited to the club gala.

Now you might think, “But what about establishment research?” Surely that gets through, right?

Monell Center — a well-regarded sensory science institute — published a genetic study on TMAU, another condition ignored for decades. Even they faced an uphill battle. The research showed genetic heterogeneity, meaning the story isn’t as simple as the textbooks would like. Ten years to publish (DNA of 130 subjects that contacted Monnell in 1999 to 2007; the paper was published in 2017). Ten. Because journals prefer tidy answers like “it’s just gene X” over complex truths like “it’s complicated and we don't fully understand it yet.”


Meanwhile, In the Land of AI

Your health chatbot? Your AI diagnostic assistant? It only reads what’s been indexed. It’s like a well-read librarian who refuses to touch any book without a barcode.

Which means all those brilliant papers:

  • From underfunded startups,

  • Crowdfunded patient trials,

  • Off-mainstream yet rigorous researchers...

Are off the radar. So AI, policy, and public knowledge stay blissfully ignorant — not due to a lack of evidence, but a lack of access.


So Why Does This Matter?

Because if you're a poor patient, or a researcher without connections, or someone who just wants to challenge bad assumptions, the system isn't just hard - it's set up to make you invisible.

Innovation doesn't fail here because it’s wrong.
It fails because it wasn’t published in the right place, by the right people, citing the right authorities.


The Streetlight Effect in Science

We’re all looking for the cure under the scientific streetlight - not because it’s there, but because that’s where the funding, indexing, and citations shine.

Meanwhile, in the dark, the real solutions — weird, messy, complex, human solutions - are waiting. But who’s going to look there?

Nobody. Unless someone with the right credentials takes a flashlight.


REFERENCES

Gabashvili IS. Cutaneous bacteria in the gut microbiome as biomarkers of systemic malodor and People Are Allergic to Me (PATM) conditions: insights from a virtually conducted clinical trial. JMIR Dermatology. 2020 Nov 4;3(1):e10508. doi: 10.2196/10508

Guo Y, Hwang LD, Li J, Eades J, Yu CW, Mansfield C, Burdick-Will A, Chang X, Chen Y, Duke FF, Zhang J, Fakharzadeh S, Fennessey P, Keating BJ, Jiang H, Hakonarson H, Reed DR, Preti G. Genetic analysis of impaired trimethylamine metabolism using whole exome sequencing. BMC Med Genet. 2017 Feb 15;18(1):11. doi: 10.1186/s12881-017-0369-8. PMID: 28196478; PMCID: PMC5310055.

Saturday, July 17, 2010

Collaboration 2.0


Information technology is letting people around the world come together in unprecedented ways. Wikis, blogs and microblogs like twitter, 
crowdsourcing and crowd-task-solving sites continue to flatten the planet.  
Scientific innovation used to be a very private endeavor, with narrowly specialized scientists delving deeply into specific research areas.  The Internet changed some of this giving rise to Wikipedia  - now orders of magnitude larger than the Encyclopedia Britannica, and similar wiki resources for gene annotations, RNA libraries, radiology images, open-source software and other content.
 
Science funding agencies may appear to be crowdsourcing solutions too - as they employ broad calls for proposals and utilize peer reviews to evaluate the proposed ideas. Their models , however, are not very effective in triggering societal impacts. They impede collaboration in many ways as the researchers are not truly working together and the feedback is not constructive. Reviewers are experts but not direct stakeholders of  proposed projects . They add management overhead (Latour, 1996).

One may argue that science is highly competitive and will always be driven by egos and desire for personal vs collective success. Yet, as Johnston and Hauser note, these very human needs could be met by more efficiently designed open source models, extending beyond snapshots of consensus,  enabling to capture specific contributions of each participant and  permanent record of the life history of the project from conception to completion.

The ease of discovery declines every year - scientists have to search for smaller asteroids, heavier chemical elements and more complicated connections. This has to be matched with either exponential increase in the number of scientists or more innovative collaboration.

People take pleasure in synchronized activities - such as singing or marching together, folding proteins or syncing their brains in a conversation.  Could scientists have meaningful conversations on unimaginable scales, conversations including citizen scientists and people whose health needs could be solved by science?
Some researchers are already using help from crowds collecting their donations to support research - like the recently started open-source research project to develop cure for neglected tropical disease schistosomiasis.
Or the Open Source PCR project supported by the public.

Recent call for collaboration asked for a framework to exchange and disseminate information,  produce guidelines and summarize finding for Participatory health research (PHR) addressing local health issues. Government agencies are using twitter and expect crowds to supply epidemiological metrics to test health policy efficacy.
Meanwhile, many are already utilizing google docs in the quest for collaborators and exchange of ideas. See for example this Folder of Useful Google Docs including:

Or check this call for collaborations in the microbiome and metabolome spaces, to solve neglected medical conditions.

Scientists, let's unite and start collaborating in even more creative ways!

ResearchBlogging.org


References 

Johnston SC, & Hauser SL (2009). Crowdsourcing scientific innovation. Annals of neurology, 65 (6) PMID: 19562693 
Wright MT, Roche B, von Unger H, Block M, & Gardner B (2010). A call for an international collaboration on participatory research for health. Health promotion international, 25 (1), 115-22 PMID: 19854843

Auer S, Braun-Thurmann H. Towards bottom-up, stakeholder-driven research funding — open science and open peer review: Available at:  http://www.informatik.uni-leipzig.de/~auer/publication/OpenScience.pdf.  Accessed May 21, 2009 

Lawrence PA (2009) Real Lives and White Lies in the Funding of Scientific Research. PLoS Biol 7(9): e1000197. doi:10.1371/journal.pbio.1000197


Marsh A, Carroll D, & Foggie R (2010). Using collective intelligence to fine-tune public health policy. Studies in health technology and informatics, 156, 13-8 PMID: 20543334 

Huss JW 3rd, Lindenbaum P, Martone M, Roberts D, Pizarro A, Valafar F, Hogenesch JB, & Su AI (2010). The Gene Wiki: community intelligence applied to human gene annotation. Nucleic acids research, 38 (Database issue) PMID: 19755503 

Latour, B. 1996. Aramis, or, The love of technology Harvard University Press, Cambridge, Mass 
Butler, D. (2010). Open-source science takes on neglected disease Nature DOI: 10.1038/news.2010.50
Facebook page, Just giving fundraiser page


Scientific collaboration: 
Idea Generation and Solving:

Crowd-Task-Solving and Freelance

  • World4brains, collaboration instead of competition for best ideas, advice and solutions - innovative payment system rewards all valuable input given
  • TaskRabbit,  linking over-stretched consumers with runners for errands, tasks and other to-do’s
  • oDesk - global marketplace for remote work
  • Elance - freelance marketplace
  • Guru - freelance community
  • Ki Work - sourcing online work
  • Amazon Mechanical Turk - micro-task crowdsourcing
  • HumanGrid - small online tasks solving
     

Crowd-Funding

     

    Thursday, July 9, 2009

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