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	<title>Comments for Sage Commons Congress</title>
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	<description>Mapping the Future of Geneomics and Healthcare</description>
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		<title>Comment on Sage Bionetworks Commons Principles by Kelly Edwards</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-79</link>
		<dc:creator>Kelly Edwards</dc:creator>
		<pubDate>Sat, 16 Apr 2011 15:30:29 +0000</pubDate>
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		<description>Re: Rachel&#039;s point:

One of the operational documents that can sit under the principles could be one about credit.  There are movements afoot to get to a Biorepository Impact Factor, where recognition would come to repository managers, data contributors that become known as high quality, useful and useable (see Anne Cambon-Thomsen, CERN France).  And also movements to shift the age-old and now dated promotions criteria within academic centers, moving toward factors that capture team science, resource development, and community-based work.  See CCPH.org.

I do agree with Rachel that the overall tone of the principles needs to be more aspirational, values-based, and rally the tribe toward aligning with these shared commitments.  The whole can be edited to leave a statement of these core commitments and values, and leave the technical details to the operational documents that will enact those values.</description>
		<content:encoded><![CDATA[<p>Re: Rachel&#8217;s point:</p>
<p>One of the operational documents that can sit under the principles could be one about credit.  There are movements afoot to get to a Biorepository Impact Factor, where recognition would come to repository managers, data contributors that become known as high quality, useful and useable (see Anne Cambon-Thomsen, CERN France).  And also movements to shift the age-old and now dated promotions criteria within academic centers, moving toward factors that capture team science, resource development, and community-based work.  See CCPH.org.</p>
<p>I do agree with Rachel that the overall tone of the principles needs to be more aspirational, values-based, and rally the tribe toward aligning with these shared commitments.  The whole can be edited to leave a statement of these core commitments and values, and leave the technical details to the operational documents that will enact those values.</p>
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		<title>Comment on Sage Bionetworks Commons Principles by Rachel A. Ankeny</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-77</link>
		<dc:creator>Rachel A. Ankeny</dc:creator>
		<pubDate>Fri, 15 Apr 2011 22:07:34 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1286#comment-77</guid>
		<description>Two quick comments which expand on the discussion this afternoon:

(1) the values underlying the document (particularly those beyond sheer efficiency) need to be better articulated in the introduction to the document as presumably we want this to serve as a stand alone document.

(2) particularly with Aled Edwards&#039;s talk in mind, I think the document could benefit significantly from a bit more aspirational talk about how to create incentives for participation in this sort of undertaking. Given that certain regimes of credit, practice, and exchange are deeply ingrained in scientific culture, and without some major shifts and changes (in journals, academic structures, and funding schemes/agencies among other institutions), it will be particularly difficult for younger scientists to participate even if they wish to do so.</description>
		<content:encoded><![CDATA[<p>Two quick comments which expand on the discussion this afternoon:</p>
<p>(1) the values underlying the document (particularly those beyond sheer efficiency) need to be better articulated in the introduction to the document as presumably we want this to serve as a stand alone document.</p>
<p>(2) particularly with Aled Edwards&#8217;s talk in mind, I think the document could benefit significantly from a bit more aspirational talk about how to create incentives for participation in this sort of undertaking. Given that certain regimes of credit, practice, and exchange are deeply ingrained in scientific culture, and without some major shifts and changes (in journals, academic structures, and funding schemes/agencies among other institutions), it will be particularly difficult for younger scientists to participate even if they wish to do so.</p>
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		<title>Comment on Sage Bionetworks Commons Principles by Kelly Edwards</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-76</link>
		<dc:creator>Kelly Edwards</dc:creator>
		<pubDate>Fri, 15 Apr 2011 21:51:27 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1286#comment-76</guid>
		<description>These principles make good sense, and I agree with Liz Horn above re: patient/data contributor stakeholders, and I know you are already attending to that.  

My interest is in seeing a principle about open communication and transparency about how the data is used.  This could be operationalized into a data use agreement.  It need not be complicated - I think there are good reasons for feedback loops on how the data from the Commons is being used: accountability to contributors, credit to resource managers, and minimizing duplicate studies or inquiries (you would not want to replicate the siloed inquiry process that goes on now, where failed experiments are going on in 15 houses at once).

One other minor point re: Terms of Use Agreement - I&#039;d advocate for a tick box on each statement that the user is being asked to agree to - otherwise, we all scroll to the bottom and tick the one box without really absorbing what we are agreeing to.  

Thanks for your efforts!  Kelly</description>
		<content:encoded><![CDATA[<p>These principles make good sense, and I agree with Liz Horn above re: patient/data contributor stakeholders, and I know you are already attending to that.  </p>
<p>My interest is in seeing a principle about open communication and transparency about how the data is used.  This could be operationalized into a data use agreement.  It need not be complicated &#8211; I think there are good reasons for feedback loops on how the data from the Commons is being used: accountability to contributors, credit to resource managers, and minimizing duplicate studies or inquiries (you would not want to replicate the siloed inquiry process that goes on now, where failed experiments are going on in 15 houses at once).</p>
<p>One other minor point re: Terms of Use Agreement &#8211; I&#8217;d advocate for a tick box on each statement that the user is being asked to agree to &#8211; otherwise, we all scroll to the bottom and tick the one box without really absorbing what we are agreeing to.  </p>
<p>Thanks for your efforts!  Kelly</p>
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		<title>Comment on Sage Bionetworks Commons Principles by sstressfl</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-75</link>
		<dc:creator>sstressfl</dc:creator>
		<pubDate>Fri, 15 Apr 2011 21:35:53 +0000</pubDate>
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		<description>If you do decide to invite the public into this  make sure you hire a good marketing/pr person to write the copy.  It reads a lot like Spock speak and therefore kinda scary big brother-ish. Regards.</description>
		<content:encoded><![CDATA[<p>If you do decide to invite the public into this  make sure you hire a good marketing/pr person to write the copy.  It reads a lot like Spock speak and therefore kinda scary big brother-ish. Regards.</p>
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		<title>Comment on Sage Bionetworks Commons Principles by Craig Alexander</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-74</link>
		<dc:creator>Craig Alexander</dc:creator>
		<pubDate>Fri, 15 Apr 2011 21:10:06 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1286#comment-74</guid>
		<description>I think this is a good start. Overall, I think it is too long and not as clear and direct as it should be. In the realm of minor edits, i suggest adding the word &quot;reliable&quot; along with comprehensible and usable in the second bullet point on page 2.</description>
		<content:encoded><![CDATA[<p>I think this is a good start. Overall, I think it is too long and not as clear and direct as it should be. In the realm of minor edits, i suggest adding the word &#8220;reliable&#8221; along with comprehensible and usable in the second bullet point on page 2.</p>
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		<title>Comment on Sage Bionetworks Commons Principles by Alice Rathjen</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-73</link>
		<dc:creator>Alice Rathjen</dc:creator>
		<pubDate>Fri, 15 Apr 2011 06:34:26 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1286#comment-73</guid>
		<description>Interesting principles.  I have a different vision of what&#039;s possible/needed but look forward to seeing what comes out of the meeting. 

Alice</description>
		<content:encoded><![CDATA[<p>Interesting principles.  I have a different vision of what&#8217;s possible/needed but look forward to seeing what comes out of the meeting. </p>
<p>Alice</p>
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		<title>Comment on Workgroup D &#8211; Enabling Sharing by Tom Freeman</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/groupd/comment-page-1/#comment-72</link>
		<dc:creator>Tom Freeman</dc:creator>
		<pubDate>Thu, 14 Apr 2011 17:07:48 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1245#comment-72</guid>
		<description>I am excited to participate in the discussion.  Industry reaearch differs from academic research in so many ways that are important for our purposed.  There is a broad gap in understanding between the two groups that goes both ways. Understanding and addressing these differences are going to be very important in engaging industry to share data.  I look forward to the perspectives of others in industry from other companies.</description>
		<content:encoded><![CDATA[<p>I am excited to participate in the discussion.  Industry reaearch differs from academic research in so many ways that are important for our purposed.  There is a broad gap in understanding between the two groups that goes both ways. Understanding and addressing these differences are going to be very important in engaging industry to share data.  I look forward to the perspectives of others in industry from other companies.</p>
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		<title>Comment on Sage Bionetworks Commons Principles by Liz Horn</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-69</link>
		<dc:creator>Liz Horn</dc:creator>
		<pubDate>Tue, 12 Apr 2011 14:54:16 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1286#comment-69</guid>
		<description>Hi Greg! 

Interesting distinction between legal rights-holders and contributers. I&#039;ve struggled with the word contributer and the role of the participant as a &quot;data contributer&quot;.

It&#039;s definitely a balance of giving participants a voice but not making it so burdensome that no data could ever be contributed to the commons.

Good stuff! See you in a few days.</description>
		<content:encoded><![CDATA[<p>Hi Greg! </p>
<p>Interesting distinction between legal rights-holders and contributers. I&#8217;ve struggled with the word contributer and the role of the participant as a &#8220;data contributer&#8221;.</p>
<p>It&#8217;s definitely a balance of giving participants a voice but not making it so burdensome that no data could ever be contributed to the commons.</p>
<p>Good stuff! See you in a few days.</p>
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		<title>Comment on Workgroup E &#8211; Platform by Barry Bunin</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/groupe/comment-page-1/#comment-68</link>
		<dc:creator>Barry Bunin</dc:creator>
		<pubDate>Tue, 12 Apr 2011 07:04:50 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1217#comment-68</guid>
		<description>CDD has linked CDD Public data to and from ChemSpider and would do the same with others, upon request, see the press release here:

https://www.collaborativedrug.com/buzz/2011/02/25/collaborative-drug-discovery-inc-royal-society-of-chemistrys-chemspider-announce-partnership/

And CDD Public data for commercial, humanitarian, and drug repurposing applications here:

https://www.collaborativedrug.com/pages/public_access</description>
		<content:encoded><![CDATA[<p>CDD has linked CDD Public data to and from ChemSpider and would do the same with others, upon request, see the press release here:</p>
<p><a href="https://www.collaborativedrug.com/buzz/2011/02/25/collaborative-drug-discovery-inc-royal-society-of-chemistrys-chemspider-announce-partnership/" rel="nofollow">https://www.collaborativedrug.com/buzz/2011/02/25/collaborative-drug-discovery-inc-royal-society-of-chemistrys-chemspider-announce-partnership/</a></p>
<p>And CDD Public data for commercial, humanitarian, and drug repurposing applications here:</p>
<p><a href="https://www.collaborativedrug.com/pages/public_access" rel="nofollow">https://www.collaborativedrug.com/pages/public_access</a></p>
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		<title>Comment on Sage Bionetworks Commons Principles by Greg Biggers</title>
		<link>http://sagecongress.org/WP/2011congress/2011agenda/draftprinciples/comment-page-1/#comment-67</link>
		<dc:creator>Greg Biggers</dc:creator>
		<pubDate>Mon, 11 Apr 2011 21:06:45 +0000</pubDate>
		<guid isPermaLink="false">http://sagecongress.org/WP/?page_id=1286#comment-67</guid>
		<description>Agreed-- this doc is a good start.

I love Misha&#039;s vision of making &#039;return of research results to human participants the norm&#039; and would go even further-- not just results, but all data associated with an individual participant. 

A couple of additional thoughts:

1. Must our endeavor be limited to disease models? What about health models? The word &quot;health&quot; might be inclusive of both good and ill health.

2. I advocate stronger language exhorting legal rights-holders to inform (maybe even seek explicit consent from?) individuals whose data is being contributed to the commons. The long term benefits of greater public engagement may be worth the short term burden placed on scientists.

Said differently, perhaps we should redefine the word, &quot;contributor&quot; to include individuals on whose biology the data is based-- not just the scientists collecting and curating that data.</description>
		<content:encoded><![CDATA[<p>Agreed&#8211; this doc is a good start.</p>
<p>I love Misha&#8217;s vision of making &#8216;return of research results to human participants the norm&#8217; and would go even further&#8211; not just results, but all data associated with an individual participant. </p>
<p>A couple of additional thoughts:</p>
<p>1. Must our endeavor be limited to disease models? What about health models? The word &#8220;health&#8221; might be inclusive of both good and ill health.</p>
<p>2. I advocate stronger language exhorting legal rights-holders to inform (maybe even seek explicit consent from?) individuals whose data is being contributed to the commons. The long term benefits of greater public engagement may be worth the short term burden placed on scientists.</p>
<p>Said differently, perhaps we should redefine the word, &#8220;contributor&#8221; to include individuals on whose biology the data is based&#8211; not just the scientists collecting and curating that data.</p>
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