The Power of Data and the Power of OneComments on: -- http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html because health professionals can't do it alone Sat, 11 Feb 2012 08:53:56 +0000 hourly 1 By: Science & Sensibility » ‘Tis the (Conference) Season: Come share, connect, and learn along with me http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-53607 Science & Sensibility » ‘Tis the (Conference) Season: Come share, connect, and learn along with me Tue, 01 Jun 2010 04:14:41 +0000 http://e-patients.net/?p=5618#comment-53607 [...] in the conversation, pushing for patient-access to be the defining characteristic of meaningful. It’s all about liberating the mounds of data that will exist in electronic health records and letting innovators, policy-makers, scientists, and [...] [...] in the conversation, pushing for patient-access to be the defining characteristic of meaningful. It’s all about liberating the mounds of data that will exist in electronic health records and letting innovators, policy-makers, scientists, and [...]

]]> By: Lucy Bernholz http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-53182 Lucy Bernholz Tue, 18 May 2010 05:15:45 +0000 http://e-patients.net/?p=5618#comment-53182 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">The Power of Data and the Power of One | e-Patients.net http://bit.ly/cDk8GT @myen</span></span> The Power of Data and the Power of One | e-Patients.net http://bit.ly/cDk8GT @myen

]]> By: Wesley Baird http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-55605 Wesley Baird Mon, 10 May 2010 17:10:59 +0000 http://e-patients.net/?p=5618#comment-55605 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">RT: @KenOConnorData A must read - Power of Data & Power of One by Susannah Fox http://bit.ly/dhA4Mn #MDM via @JackieMRoberts:</span></span> RT: @KenOConnorData A must read – Power of Data & Power of One by Susannah Fox http://bit.ly/dhA4Mn #MDM via @JackieMRoberts:

]]> By: Jodi Sperber http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52926 Jodi Sperber Fri, 07 May 2010 19:59:23 +0000 http://e-patients.net/?p=5618#comment-52926 In the spirit of cross-disciplinary inspiration, there has been a parallel stream of conversation happening in the philanthropy world, where there is a growing level of energy around open data and transparency. A good entree to this can sector be found by reading Lucy Bernholz's (@p2173 on Twitter) blog: http://philanthropy.blogspot.com/ "Disrupting Philanthropy," a paper on which she was lead author, also provides some fantastic fodder for thought. Her writing always gets the conversations going, just like here! In the spirit of cross-disciplinary inspiration, there has been a parallel stream of conversation happening in the philanthropy world, where there is a growing level of energy around open data and transparency.

A good entree to this can sector be found by reading Lucy Bernholz’s (@p2173 on Twitter) blog: http://philanthropy.blogspot.com/

“Disrupting Philanthropy,” a paper on which she was lead author, also provides some fantastic fodder for thought.

Her writing always gets the conversations going, just like here!

]]> By: govwiki http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52922 govwiki Fri, 07 May 2010 17:48:19 +0000 http://e-patients.net/?p=5618#comment-52922 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">RT @ghideas See @SusannahFox new post a must read: The power of #opendata http://bit.ly/aRqZkn #73cents #g2e ... http://bit.ly/cTue80 #ogov</span></span> RT @ghideas See @SusannahFox new post a must read: The power of #opendata http://bit.ly/aRqZkn #73cents #g2e … http://bit.ly/cTue80 #ogov

]]> By: Andrew Spong http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52920 Andrew Spong Fri, 07 May 2010 14:24:05 +0000 http://e-patients.net/?p=5618#comment-52920 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">The Power of Data and the Power of One http://bit.ly/bZIJjU | ePatients.net #hcsmeu #hcsm</span></span> The Power of Data and the Power of One http://bit.ly/bZIJjU | ePatients.net #hcsmeu #hcsm

]]> By: Carlos Rizo http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52918 Carlos Rizo Fri, 07 May 2010 02:59:04 +0000 http://e-patients.net/?p=5618#comment-52918 I re-learned from an esteemed colleague this week a very important lesson about openness. He said that we need to stop using computers as mere typewriters and instead, use them understand and satisfy the requests of people and machines to use Web content more effectively. With #opendata more knowledge/wisdom will be available to those who needed it the most. I re-learned from an esteemed colleague this week a very important lesson about openness. He said that we need to stop using computers as mere typewriters and instead, use them understand and satisfy the requests of people and machines to use Web content more effectively. With #opendata more knowledge/wisdom will be available to those who needed it the most.

]]> By: Ray Goldberg http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52917 Ray Goldberg Fri, 07 May 2010 02:47:43 +0000 http://e-patients.net/?p=5618#comment-52917 Yes, these two are the same point -- at the population and individual levels. Thanks for connecting these dots. Get the right data in the right hands, and the right things can happen. Yes, these two are the same point — at the population and individual levels. Thanks for connecting these dots. Get the right data in the right hands, and the right things can happen.

]]> By: Susannah Fox http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52913 Susannah Fox Thu, 06 May 2010 19:33:39 +0000 http://e-patients.net/?p=5618#comment-52913 Everyone: Ted was one of the reviewers of the HHS open government plan, which I link to above. He's going to lead a DCWEEK session on June 16 called "The Data We've All Left Behind: Uncovering The Social Media Data Trail" -- definitely another public service/data geek meet-up to add to your schedule if you live near or plan to visit DC that week: http://schedule.digitalcapitalweek.org/ Everyone: Ted was one of the reviewers of the HHS open government plan, which I link to above.

He’s going to lead a DCWEEK session on June 16 called “The Data We’ve All Left Behind: Uncovering The Social Media Data Trail” — definitely another public service/data geek meet-up to add to your schedule if you live near or plan to visit DC that week:

http://schedule.digitalcapitalweek.org/

]]> By: Susannah Fox http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52912 Susannah Fox Thu, 06 May 2010 19:30:33 +0000 http://e-patients.net/?p=5618#comment-52912 Thanks for those points about mass data - and the reminder that mobile is going to have a significant effect on this sector, too. Thanks for those points about mass data – and the reminder that mobile is going to have a significant effect on this sector, too.

]]> By: SusannahFox http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52935 SusannahFox Thu, 06 May 2010 17:48:25 +0000 http://e-patients.net/?p=5618#comment-52935 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">Do me a favor: Read http://bit.ly/aRqZkn and tell me if it makes sense to connect #myhealthdata and #opendata (honest question)</span></span> Do me a favor: Read http://bit.ly/aRqZkn and tell me if it makes sense to connect #myhealthdata and #opendata (honest question)

]]> By: Ted Smith http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52909 Ted Smith Thu, 06 May 2010 17:11:36 +0000 http://e-patients.net/?p=5618#comment-52909 Susannah - this is such a great topic. Thumbing through the HHS Open Government Plan (available at http://www.hhs.gov/open/) you can see that this is an effort HHS is taking very seriously. The agency recognizes that there is a profound difference between data and information and is working to find venues (including the Gov 2.0 efforts) where private sector and non-profits will choose to engage to add value to the data. Think about NOAA and all of the commercial applications of their data that were enabled. Looking at the CHDI datasets as a transparency advocate, I'm glad one person can look at it - but I'm encouraged that many organizations can use parts of it to improve and expand the services they provide. Susannah – this is such a great topic. Thumbing through the HHS Open Government Plan (available at http://www.hhs.gov/open/) you can see that this is an effort HHS is taking very seriously. The agency recognizes that there is a profound difference between data and information and is working to find venues (including the Gov 2.0 efforts) where private sector and non-profits will choose to engage to add value to the data. Think about NOAA and all of the commercial applications of their data that were enabled. Looking at the CHDI datasets as a transparency advocate, I’m glad one person can look at it – but I’m encouraged that many organizations can use parts of it to improve and expand the services they provide.

]]> By: Mike Baldwin http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52905 Mike Baldwin Thu, 06 May 2010 14:58:05 +0000 http://e-patients.net/?p=5618#comment-52905 Susannah interesting post and also like the contribution that Mark has made. Clearly in the coming years there will be further inputs made to data sets with the rise of mobile applications. Having worked with this type of mass data I know that we need to consider some boundaries or constraints on how these data should or could be used. I'm fine about calling conclusions from retrospective databases hypothesis generating but urge that we don't fall too much into claiming falsehoods? Oh and the development of patient apps that they (or should I say we) can use. Susannah interesting post and also like the contribution that Mark has made. Clearly in the coming years there will be further inputs made to data sets with the rise of mobile applications. Having worked with this type of mass data I know that we need to consider some boundaries or constraints on how these data should or could be used. I’m fine about calling conclusions from retrospective databases hypothesis generating but urge that we don’t fall too much into claiming falsehoods? Oh and the development of patient apps that they (or should I say we) can use.

]]> By: Susannah Fox http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52901 Susannah Fox Thu, 06 May 2010 12:43:21 +0000 http://e-patients.net/?p=5618#comment-52901 One of the primary findings of the Pew Internet Project's research is that the internet is changing people's relationship with information, which is changing their relationship with institutions. This post is about the way an individual can connect that shift to their own life (such as viewing your complete medical record, whether it is electronic or not) and how an institution can connect that shift to their work (such as the U.S. gov't inviting citizens to work with data that has previously been difficult to access, not out of the goodness of their hearts but b/c they hope to discover new things). There are, of course, two different "ball games" as you write, but isn't it amazing to watch them being played in parallel? That's what I'm about - noticing the patterns. One of the primary findings of the Pew Internet Project’s research is that the internet is changing people’s relationship with information, which is changing their relationship with institutions.

This post is about the way an individual can connect that shift to their own life (such as viewing your complete medical record, whether it is electronic or not) and how an institution can connect that shift to their work (such as the U.S. gov’t inviting citizens to work with data that has previously been difficult to access, not out of the goodness of their hearts but b/c they hope to discover new things).

There are, of course, two different “ball games” as you write, but isn’t it amazing to watch them being played in parallel? That’s what I’m about – noticing the patterns.

]]> By: Anne Marie Cunningham http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52900 Anne Marie Cunningham Thu, 06 May 2010 11:41:00 +0000 http://e-patients.net/?p=5618#comment-52900 Thanks for the clarification. I completely agree that patients should be able to access their records if they wish. To me this is not about open data, but about the good sense of making the story and information that is contained in notes, and which patients already have an absolute right to access, as easy as possible to access. Open, aggregated data, as Mark points out is a whole different ball game. Thanks for the clarification. I completely agree that patients should be able to access their records if they wish. To me this is not about open data, but about the good sense of making the story and information that is contained in notes, and which patients already have an absolute right to access, as easy as possible to access.
Open, aggregated data, as Mark points out is a whole different ball game.

]]> By: Alex Howard http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52886 Alex Howard Thu, 06 May 2010 00:21:12 +0000 http://e-patients.net/?p=5618#comment-52886 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">The power of #opendata http://bit.ly/aRqZkn Excellent post by @SusannahFox | #g2e #gov20 #health2con #HIT #opengov #OGI</span></span> The power of #opendata http://bit.ly/aRqZkn Excellent post by @SusannahFox | #g2e #gov20 #health2con #HIT #opengov #OGI

]]> By: Gregg Masters http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52881 Gregg Masters Wed, 05 May 2010 23:34:16 +0000 http://e-patients.net/?p=5618#comment-52881 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">RT @SusannahFox: "interest + data = power" (LOVE this summary, @MaiaKG - thanks!) http://bit.ly/aRqZkn >> BIG Aho!!</span></span> RT @SusannahFox: "interest + data = power" (LOVE this summary, @MaiaKG – thanks!) http://bit.ly/aRqZkn >> BIG Aho!!

]]> By: Dave deBronkart http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52876 Dave deBronkart Wed, 05 May 2010 23:20:40 +0000 http://e-patients.net/?p=5618#comment-52876 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">Another brilliant, inspiring @SusannahFox post: The power of #opendata http://bit.ly/aRqZkn <= SUCH a smart person & good writer</span></span> Another brilliant, inspiring @SusannahFox post: The power of #opendata http://bit.ly/aRqZkn <= SUCH a smart person & good writer

]]> By: tedeytan http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-55606 tedeytan Wed, 05 May 2010 21:05:13 +0000 http://e-patients.net/?p=5618#comment-55606 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">Thanks for taking this further! http://bit.ly/aRqZkn #73cents #g2e #gov20 #health2con /via @SusannahFox</span></span> Thanks for taking this further! http://bit.ly/aRqZkn #73cents #g2e #gov20 #health2con /via @SusannahFox

]]> By: Mark Hawker http://e-patients.net/archives/2010/05/the-power-of-data-and-the-power-of-one.html/comment-page-1#comment-52890 Mark Hawker Wed, 05 May 2010 19:56:17 +0000 http://e-patients.net/?p=5618#comment-52890 Thank you, Susannah. I shall check out those posts. I guess the medical record is comprised of a number of data sources from multiple organisations so you could find the data quality issues. I'm still wrapping my head around the scale of this and trying to come up with parallels with initiatives in the UK. I will keep digging. Thank you, Susannah.

I shall check out those posts. I guess the medical record is comprised of a number of data sources from multiple organisations so you could find the data quality issues.

I’m still wrapping my head around the scale of this and trying to come up with parallels with initiatives in the UK.

I will keep digging.

]]>