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 senthttp://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