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YES! Exactly! And then have posts automatically directed to subscribers by email if they opt in for that. uBiome does have a blog, but the most recent post was July 2nd. They seem to largely post the same content on the blog as in the notices to subscribers, except slightly more info is in the blog. Frankly, the reverse would be nice. As a subscriber, you gave them money and you don't want to feel like you are out of the loop. You want to feel like you know as much if not more than and other Joe on the street who happens to read the blog. - Patricia On Sun, Jul 28, 2013 at 6:21 PM, Anoop B <[log in to unmask]> wrote: > I was about to write about being transparent throughout the process by > maintaining a simple blog which gets updated every week. In this day and > age, this should be a piece of cake. Where are you in the process, why is > is taking so long and such. You could also have put the questions of the > IRB approval and how it costs so much money and what do people think are > the best options. > > This way you are not only interested in their money, but also their ideas > and suggestions.Then it becomes a true crowd sourcing i think. > > > On Sun, Jul 28, 2013 at 6:13 PM, Patricia Anderson <[log in to unmask]> wrote: > >> Hi, Amy, >> >> Most of my happy experiences with crowdfunding have been for personal >> items rather than research (games and art and such). I am a huge fan of >> crowdfunding for science and citizen science, but uBiome was one of the >> first I funded, and hasn't gone so well. The other science and research >> related projects I funded were funded later and have not caught up with >> uBiome in their timelines. Sad to say, even those are (like uBiome) not >> meeting standards for communication. Is that part of the culture of >> science? Hmmm. >> >> Another research project I funded got the money, said they were adding me >> to an information list to hear what they are doing, and that was the last I >> heard from them. That wasn't a project like uBiome, where I should have >> received 'stuff', just giving them money because I wanted to support their >> research. Still, when all I wanted from them was email, I thought I should >> have gotten a few. >> >> I have funded a few tech projects, like the Pebble, Kinsa, and Scandu. >> Most of those are still waiting on rewards. The way it works is that once >> they get the money, then they start actually making the products, so there >> is a time lag. In my experience, for tech, I get the products about a year >> later. For print games, within a couple months. For electronic or video >> games, also a year or two. >> >> My thoughts on best practices for communication with your supporters? >> 1. Have a public blog, post at least once every 1-2 weeks. >> 2. Private posts to supporters at least once a month, preferably once a >> week. >> >> Some groups are having G+ hangouts where they show behind the scenes work >> in progress. Some post notes about "Hey, we're negotiating with the >> presses, and we have to change our plan" or "got the proofs and they are >> gorgeous, here's a pic." People will forgive you a lot if you communicate >> regularly and they feel informed. >> >> - Patricia >> >> >> >> On Sun, Jul 28, 2013 at 5:49 PM, Amy Price <[log in to unmask]> wrote: >> >>> Thanks for your response Patricia- it is really helpful. Jessica's take >>> on the issues are here >>> http://blogs.scientificamerican.com/guest-blog/2013/07/22/crowdfunding-and-irbs-the-case-of-ubiome/ >>> this article is better in my opinion and more constructive that the link >>> I sent >>> http://blogs.scientificamerican.com/doing-good-science/2013/07/24/ethical-and-practical-issues-for-ubiome-to-keep-working-on/ >>> I have been thinking through Crowd funding but all the emotional rhetoric >>> makes it a challenge to filter. There are issues with public paying direct >>> for research and bias even is there an acceptable payment threshold or is >>> it all a slippery slope. What was your best crowd funded experience? I have >>> an 86 yr old person I work with and she loves 23 and me but is also aware >>> of the genetic identity vulnerabilities. It would be good to offer wisdom >>> for new projects and ethical issues with crowd sourcing along with ways to >>> bridge these gaps. >>> >>> It seems sad to have the initiative to raise 350,000 and then be hurt by >>> insufficient planning and Twitter or blog vitriol. Some blogs/tweets >>> compare them to pharma corruption and massive ethical harm where multitudes >>> died. So thankful for my advisors who said go slow and do it right and gave >>> examples. >>> >>> I am sorry about your mom and being sick. I hope life gets better soon >>> for you… >>> >>> Best, >>> Amy >>> >>> From: Patricia Anderson <[log in to unmask]> >>> Date: Sunday, July 28, 2013 2:16 PM >>> To: Amy Price <[log in to unmask]> >>> Cc: evidence-based-health <[log in to unmask]> >>> Subject: Re: UBiome ethics and crowdsourcing >>> >>> Hi, Amy, >>> >>> Thanks very much for this informative article. >>> >>> As a uBiome participant, I find this all very interesting. I have >>> participated in a number of citizen science and crowdfunded projects. I >>> chose uBiome over American Gut (both crowdfunded microbiome projects were >>> open at the same time) specifically because I don't have much money and >>> uBiome was significantly cheaper. Like Judy Stone, the author of the >>> article, I have found Jess's Twitter handle jarring, although I didn't have >>> the same problem with her TEDMED presentation. >>> >>> I will say that my experiences as a participant fall in line with the >>> general sense of the article, that being that uBiome did not properly >>> prepare for this venture, that the project is inadequately researched and >>> funded, and overall ill-managed. >>> >>> In my communications from and to the uBiome folk, the experience has >>> been by far the worst of any crowdfunded project I've contributed to, bar >>> one. That one was a project to raise donations for a man lacking health >>> insurance who needed emergency surgery or he would die. I've never gotten >>> the promised "rewards", and I'm assuming that his health situation did not >>> go as hoped. I was aware of that possibility going in. With uBiome, it's a >>> rather different situation. As far as I know, the people behind the project >>> haven't died, and I don't know what their excuses are for these delays. >>> (I'm way behind on a big project right now, but I've been pretty >>> transparent about reasons for my delays - new diagnosis, chronic illness >>> adjustments, bronchitis, and my mother died.) >>> >>> Most crowdfunded campaigns I've supported communicated regularly, some >>> too often! Not uBiome. Official notices from them have gaps of several >>> months between them. After their February 21 notice that funding was >>> approved, there was no further notice until April 18th. During her TEDMED >>> talk I complained about the lack of communication and that kits had not >>> been made available yet. She tweeted back that they were almost ready. >>> >>> April 25th uBiome announced that kits were now available for public >>> purchase, with participant kits to be shipped in May. May 2 they requested >>> shipping info. May 24th they finally announced that the original >>> participants would receive kits in June. This was the same message that >>> included the alert that their IRB had been approved. June 13th I sent them >>> a message expressing concern that I had filled in the survey multiple times >>> without receiving even so much as an auto-confirmation. I didn't even know >>> if they receive my info! >>> >>> June 16th I received an apology from them stating that I'd now receive >>> my kit in early July. Also on June 16th they sent another Ideigogo update >>> saying they would start shipping as soon as we filled in our personal >>> surveys for the shipping info & tshirt size. This was, I THINK, also when >>> the IRB portion was folded in, and some other cute stuff, like naming their >>> 'robots'. >>> >>> July 2 they sent another update saying the kits were ready to ship, and >>> apologizing for delays. It is now July 28, and I've still heard and seen >>> nothing more. >>> >>> So, based on my experience, I really don't have anything good to say >>> about uBiome at this point in time. This has been the most disappointing >>> crowdfunding project I've every supported. >>> >>> - Patricia >>> >>> >>> >>> >>> >>> >>> On Sat, Jul 27, 2013 at 10:36 PM, Amy Price <[log in to unmask]> wrote: >>> >>>> Dear All. >>>> >>>> >>>> http://blogs.scientificamerican.com/molecules-to-medicine/2013/07/25/ubiome-ethical-lapse-or-not/?WT.mc_id=SA_sharetool_Twitter >>>> Jessica Richman YOUR BIOME, This is a citizen science project that crowd >>>> sourced funding for research. This article is very opposed. Value your >>>> views on how to handle this… >>>> >>>> Best >>>> Amy >>>> >>>> * >>>> * >>>> >>> >>> >>> >>> -- >>> Patricia Anderson, [log in to unmask] >>> Emerging Technologies Librarian >>> University of Michigan >>> http://www.lib.umich.edu/users/pfa >>> >> >> >> >> -- >> Patricia Anderson, [log in to unmask] >> Emerging Technologies Librarian >> University of Michigan >> http://www.lib.umich.edu/users/pfa >> > > -- Patricia Anderson, [log in to unmask] Emerging Technologies Librarian University of Michigan http://www.lib.umich.edu/users/pfa