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[Not a member of the research community? Please go to our campaign for the general public instead.]
Whether you're a researcher, or a member of a research ethics committee, undoubtedly you spend hours negotiating informed consent document language back-and-forth every year.
Worldwide, every year, researchers and research ethics committees spend at least a million hours negotiating informed consent language to describe these very same activities and risks. This results in many different sets of language both within and between research organizations to describe the very same things, and is not a value-added use of anyone's time.
We are undertaking this project to establish a new standard and open source repository of informed consent language, to describe the activities involved in research studies, and the risks associated with those activities. Once established, it will permanently remove a million hours a year from the research ethics review process worldwide; a huge improvement in the efficiency of the system. Further downstream, this standard can be used to improve the effectiveness of the informed consent process, by serving as a research platform to refine the language as needed to ensure research participants understand it, and then to use the same careful process to translate these standard clauses into other languages, and other media such as multimedia (e.g. - animated videos).
Awesome! How Can I Help?
There are three ways you can help move this project forward:
- Share the campaign with your social networks by clicking one of the buttons at the top of this campaign page (just under the video).
- Spread our message far and wide by adding your social voice to our Thunderclap campaign. If our Thunderclap campaign reaches its goal of 100 participants, our message will be amplified when — simultaneously — every participant has a one-time post to his/her social media profile(s) about this project.
- Make a donation and help us reach our target by choosing one of the donation levels to the right of the page, and the corresponding “perk”.
How Will You Use My Funds?
Charting the Course:
- Hire a summer intern to conduct a meta-analysis of research studies
- Determine the most common activities in research studies
Finding the Experts:
- Crowdsourcing of expertise
- Vetting of expertise
Getting It Done:
- Bring together the experts to do this work, and compensate them for their time (it's going to be hard work!)
- Electronic platform development costs (mostly developed already by Stewardly)
Nitty Gritty:
- Establish a non-profit organization to evolve and steward this standard into the future
- Legal costs
- Insurance
Processing + Platform
- FundRazr fee
- PayPal/payment processing fees
Every dollar raised above our goal, minus the processing and platform costs, will be provided directly to the newly established non-profit, to further this work.
About the Perks for this campaign...
- Stewardly is greatly committed to this cause, and this project. So much so, that matching amounts of software credits* for use with Stewardly software services will be provided to all donors. Over the coming months, Stewardly will release a number of software services that will enable researchers, research ethics committees and research organizations to increase their efficiency and effectiveness with respect to the research ethics review process.
- *Credits are for use with Stewardly software services only, and are not valid towards the e-REB system offering that Stewardly has made available for research ethics committees in partnership with Fluidware. That offering includes use of the FluidReview software service, which Fluidware has already made available as a special package for research ethics committees.
Who is spearheading this project?
You might be wondering who thought up this project, and has been the driving force behind it. Josh Leslie, the founder of Stewardly shares a bit of his story and his reasons for undertaking this work in this short video:
He shares some of his concerns with top-down approaches to research ethics streamlining in this other short video:
Frequently Asked Questions (FAQ)
Q: How did you arrive at a figure of 1 million hours a year?
A: A very fair question! Short answer:
- 500,000 for researchers (and research teams) per year, worldwide, in preparing the "activities" and "risks" clauses of informed consent documents for submission to research ethics committees, and negotiating language for those clauses back-and-forth.
- 500,000 hours for research ethics committees per year, worldwide,
in reviewing the "activities" and "risks"
clauses of informed consent documents, and negotiating language for
those clauses back-and-forth.
- 400,000 hours for initial reviews of research studies
- 100,000 hours for reviews of amendments to research studies (that affect these informed consent clauses)
Longer answer: [forthcoming]
Q: You are running 2 crowdfunding campaigns simultaneously: one for the research community, and one for the general public. Are you "double-dipping"?
A: This is a valid concern to have, but rest assured that this is not the case. The reason we are running 2 campaigns simultaneously, is for two main reasons:
- The different communities (research vs. general public) require different levels of detail with respect to this project.
- The "perks" for each of these communities are different.
We searched for a crowdfunding platform that would be able to support having the total amount raised for both campaigns roll up into an overall 'master' total, and thought that we would be able to accomplish this via FundRazr, the platform we ended up selecting. However, unfortunately the current FundRazr platform only supports #1 and cannot support #2. This caused a delay in launching our campaign to the research community, which was an unanticipated technical issue, and for which we apologize.
This also means that in order to keep the total in each campaign updated accurately, once a week we will have to manually 'sync' the funds raised. For the duration of both campaigns we will do this, and publish an update when the funds have been added. By way of concrete example, if $1000 is raised in one week via the general public campaign, we will manually add that to the total for the research community campaign, and then post an update letting followers of our research community campaign know.
Perks
- 0 claimed
- 5 remaining
As a top supporter of this campaign, and this project, Stewardly will provide advance access to, and use of, its software services as they are developed, for a period of one year (until 2015-07-24). Get access months before anyone else, and have the opportunity to provide feedback as the services are developed! [Acceptance of non-disclosure agreement is required to claim this perk.]
Highlights
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A new standard, and a new research platform! Community
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How it works
To appear in our community, simply make a contribution to our campaign
and show your name, or inspire a contribution from someone else by sharing your personal link (below).
The more contributions you make or inspire, the higher you'll go and the more the campaign will benefit.
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- 5 remaining
As a top supporter of this campaign, and this project, Stewardly will provide advance access to, and use of, its software services as they are developed, for a period of one year (until 2015-07-24). Get access months before anyone else, and have the opportunity to provide feedback as the services are developed! [Acceptance of non-disclosure agreement is required to claim this perk.]
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