Thursday, August 27, 2015

A worthy cause: Help fund a "Patient Centered Probiotics Reference"

UPDATE 8/27/15 - May have had a brain cramp on this.  See comment from Richard Jefferson.  Not sure this is in fact a worthy cause.

As many know I expend a lot of energy railing against overselling of the microbiome. And one aspect of this is the misinformation that is out there regarding probiotics. Well, this looks like it might help provide an antidote to some of the BS that is out there: This is a crowdfunding effort to create a curated resource with information on scientific studies of probiotics.
Powered by FundRazr
From their site:
In his book, "Follow Your Gut", Dr. Rob Knight cited several examples of how your gut microbes can affect your mood, the functioning of your immune system and inflammatory diseases. He suggests that you consult your physician or pharmacist to recommend probiotics that have randomized, placebo controlled trials backing them or failing that, you can survey the latest research published in scientific journals yourself. I know this is not a simple task for the regular consumer. A master reference of probiotics that you can refer to when making decisions on what products to purchase would be a handy thing. Dr. Knight notes in his book, that "...no patient centered resource exists that compiles this data." If someone were to go ahead and do a google search for this information, you'd have to wade through a lot of marketing material from companies trying to sell you stuff. By focusing on the peer reviewed scientific literature, we eliminate all the marketing material. The research reports are then read and summarized by our scientists (curators) who put it in our reference database in a language you don't need to be an expert to undestand. My colleague, Dr. Stephan Schurer, of the University of Miami Medical School, and I have built databases as tools for researchers to search for new drugs. We built these by extracting & summarizing research published in scientific journals. We propose to use a similar approach to build the probiotics reference. The money we raise will go to purchasing subscriptions to the scientific journals (like Journal of Gastroenterology and Gut Pathology) so that we can download the relevant research articles. It also goes to pay the part time curators who will read the journals and enter the key information into the database and lastly it goes to the costs of hosting a website and licensing of necessary softwares. Please help us in any way you can. We greatly appreciate monetary pledges, but also we need you to tell your friends and spread the word about our project.
Definitely seems like a worth project

2 comments:

  1. Jonathan, you know I respect you in all three of your roles. Rockstar of microbiomes, champion of open access, and warrior for gender (and other) inequities in science.

    And this concept is critically important. But I take your recommendations serious because of the Troika of Good Roles. So I looked at this. And the proposal is for 5k to 'kind of, you know, take out subscriptions to journals'. There is no disclosed plan for hosting and updating, ensuring credible and critical oversight, maintaining and nourishing a sustainable activity, nor any other aspect that has any hope of providing the important resource they allude to. I WANT such a resource. I WANT to see snake oil poured out and called out. I WANT thoughtful, tested and reliable microbial interventions to be considered as a new norm in health. And I was ready to put my money into such an activity. Then I looked at it. I couldn't find the strategic plan. Couldn't find the budget (umm....journals, really?)...nor CVs of the promoters.

    5000 dollars to do what exactly? I won't pay for 1% of it. To make and run this thing with the degree of professionalism it will require to ensure quality is an expensive undertaking. The kind of thing that NLM does through NCBI utterly brilliantly. But then you notice that the 'perk' for investment include:

    Super Reg's Kamboocha recipe and a 12 months access to the ProBX database.

    Well that's reassuring that we're funding a paywalled database. Where's the business plan? Where's the public good component?

    C'mon Jonathan. Don't squander your insanely great brand endorsement without helping us understand why you spruik something. I TRUST you. I LIKE you. I even ADMIRE you. I WANT this resource. But I can't find any evidence that I'd get such a resource through this venture. What did I miss?

    ReplyDelete
    Replies
    1. I have nothing really to back up my support of this. A colleague sent me the link. It seemed like a good cause. And they were not trying to raise too much money. I don't know the people. But given that it was 5K and that the product could be useful, it seemed worth some small risk. But now that you have dug into it, I am, well, not overjoyed with their plan, to say the least.

      Delete

Most recent post

My Ode to Yolo Bypass

Gave my 1st ever talk about Yolo Bypass and my 1st ever talk about Nature Photography. Here it is ...