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From Wikipedia, the free encyclopedia

Ballotpedia
Ballotpedia logo.png
Type of businessNonprofit
Type of site
Wiki
Available inEnglish
HeadquartersUnited States
OwnerLucy Burns Institute
Websiteballotpedia.org
Alexa rankIncrease 1,663 (As of 27 January 2019)[1]
CommercialNo
LaunchedMay 30, 2007; 12 years ago (2007-05-30)[2]
Current statusActive

Ballotpedia is a nonprofit and nonpartisan online political encyclopedia written by a staff of researchers and writers.[3][4] Founded in 2007, it covers American federal, state, and local politics, elections, and public policy.[5][6][7][8] Ballotpedia is sponsored by the Lucy Burns Institute, a nonprofit organization based in Middleton, Wisconsin. As of 2014, Ballotpedia employed 34 writers and researchers;[9] it reported an editorial staff of over 50 in 2018.[10]

YouTube Encyclopedic

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  • ✪ Return of Genomic Results - Current Applications and Challenges - Iftikhar Kullo

Transcription

Iftikhar Kullo: Thank you. So if we could go to the next slide, I wanted to thank people who contributed to this presentation, my co-chair, Gail Jarvik. Great input from the panel members: Larry, Susan, and Lisa. I would like to thank them. And I also got some input from the Return of Results Working Group, which the members are listed here. So I'm just going to briefly tell you about the evolution of ROR in eMERGE and then talk about some future directions. So next slide, please. And next. I think in the initial return of results deliberations in Phase I, obviously, the unique thing was return of results in the context of EHR, and this group kind of summarized its recommendations in the favor of genetics and medicine; looking at return of results that may vary in the context of each site or other factors such as age; highlighting the importance of the need to generate evidence of clinical validity and actionability before returning results; what are the appropriate methods of return of results; and the need to -- and to obtain opinion across diverse sites, and also input from lay community and advisory bodies. So this group kind of started the process. Next slide, please. And then in Phase II, it was clearly a focus towards implementation, and this is being done in site-specific projects at each site and also at network projects. And this is just -- not a full but a partial listing of the genomic medicine pilot projects that are being undertaken just to show you the flavor of these pilots. Some are including genetic risk scores, for example, for macular degeneration or for myocardial infarction. Others are using just single SNPs, ApoL1, for example, or HFE, or Factor V Leiden. Geisinger is doing a study of whole genome sequencing in trios for diagnostic odysseys. And then several of the pediatric sites are looking at returning CYP2D6 or hypothetical CYP2D6 results to patients or parents. Next slide, please. So, this is an example of an EHR-based genomic medicine pilot study. Myocardial infarction is a leading killer of people in the United States. It often presents as sudden death. We do very poorly with conventional risk factors for predicting myocardial infarction, so the population implications are huge. And if there's any way, any way, however modest, where we can improve the ability to refine risk stratification, that has huge implications, and therefore we are conducting this pilot study, or the Myocardial Infarction Genes Study, of giving patients a genetic risk score based on 28 SNPs that are related to susceptibility versus just giving them conventional risk factor information. And this is communicated by a genetic counselor using the electronic medical record, and they follow up with an M.D. with it, and then we assess them at three and six months for endpoints such as LDL cholesterol, weight, activity, diet changes, and also some other assessment of how patients understand these results and what they do based on these results. Next slide, please. And these are a few examples of network-wide projects. You've heard a lot about eMERGE PGx; I won't go into that. We are trying to assess the phenotypic correlates of copy number variation and even larger chromosomal abnormalities, what the phenotypic correlates are on medical record, and this was already highlighted in the project to look at hemochromatosis variants. It illustrates the power of eMERGE in that we have a total of 1,459 individuals across the network that have one or the other of these variants, and so we can look at the pleiotropy and penetrance. Next slide, please. Next. And so for return of results, there's a perfect storm in a way because there's been so much investment by institutions and biorepositories, and this has coincided with the HITECH Act and the need to implement electronic medical records, and then the remarkable advances in genome sequencing. So all of these factors are really going to toil [spelled phonetically] us over the next many years the issue of return of results. Next slide, please. And so, unique -- the eMERGE network is uniquely made to address some of these issues, not only in the context of genomic discovery, which we already discussed the many questions we can answer in terms of pleiotropy or longitudinal phenotypes, but also in implementing genomics in the electronic medical record, whether it's storing the data, visualizing it, linking it to decision support, dealing with incidental findings, reinterpretation, looking at outcomes. And then these kind of somehow merge together in the learning EHR paradigm that was alluded to earlier, and so I think eMERGE is uniquely positioned to do both the discovery, implementation, and some of the aspects that are in between these two paradigms. Next slide, please. And in the context of discovery, I think this is a huge area. I can't really summarize it in one slide, but in the context of EHR, the questions were already discussed in the previous presentations, documentation in the EHR, communication to family members, unique problems in the pediatric setting, what are the patient preferences, what about consent, the mechanism and timing of ROR, the incidental findings. So all of these are important questions, and together with CSER, we have the CSER Cohort Consortium, we've had some initial deliberations, and Gail is leading an effort to summarize some of the recommendations in a manuscript that [inaudible]. Next slide, please. In the context of implementation, obviously there's a question of what could be returned. And you could think of it as listed there, or in the [unintelligible] paradigm suggested by Burg [spelled phonetically] and colleagues, we could return copy number variation, recessive mutation, single nucleotide variants that are relevant to disease susceptibility, or pharmacogenomics, or genetic risk scores as they mentioned. And then, of course, the whole issue of sequencing and what comes out of sequencing, actionable variants as well as incidental findings. Sequencing can be genome-wide sequence, or all exome, or targeted. There's a fair bit of effort, then, to ascertain the clinical validity of these findings, and so, jury concept where medical experts and others decide on that aspect, the need for this to be clear, certified if it's going to be in the medical record. And sometimes we will also need to resort to statistical modeling and -- to really create the correct statistic for what the genetic variant or the collection of variants implies for risk. And this has to be integrated in the EHR, and then we have to deal with the ELSI issues. And some of the legal aspects that were highlighted were actually summarized in the paper we wrote in the EHR team issue, and I will refer panelists to that manuscript. The question of storage and reinterpretation, again, very important when we're looking in the context of implementation and the clinical decision support issues, as well as then trying to assess outcomes of all of this effort, and perhaps, initially, just as implementation outcomes but, of course, longer term and be able to do clinic outcomes as to -- that are patient-centric. Next slide, please. And so these are some ideas that were thrown around for developing a framework where we could assess some of these challenges. For example, let's talk about whole genome or whole exome sequencing as Debbie mentioned, and the unique aspects would be the multiple phenotypes that we could look at to correlate with this data. The issues of penetrance, pleiotropy, pediatric considerations, pathogenicity; all of these eMERGE could unique address. We could think about targeted sequencing. This could be the 56 ACMG genes. Again, issues related to pathogenicity, informing kin, et cetera. There's this very widely-used genetic testing in the clinics which is usually doing candidate gene panels. For example, at our institution, we do a whole lot in terms of cardiomyopathies, hypertrophic or dilated. We talk about aneurysms, aortic aneurysm syndromes, sudden death syndromes, pediatric syndromes. So these are often very expensive, they take months to come back, and perhaps where eMERGE would contribute in focused genomic medicine pilot projects. And, of course, we shouldn't forget high-density genotyping which has been our forte for eMERGE, and many of the sites not only have common variants, but also with the more affordable rare variant CHiPs, there's a fair bit of data on rare variants as well, so correlating these to EMR and the right phenotypes would be quite useful. Next slide, please. And I think I'm going to quickly go this because these were very nicely discussed. Within the framework of EHR implementation, we have to address participant privacy and potential vulnerability to adverse social consequences, and therefore appropriate consent to include genomic data in the EHR has to be there. We discussed recontact to ascertain preferences and over time, and how this could be done electronically, I think, is, again, an area ripe for investigation. Next slide. And we, of course, need to learn more about how stakeholders perceive all of this activity, whether they're patients, parents, guardians, family members, care providers, laboratorians, investigators, or biorepository scientists. Next slide, please. And I would submit that the eMERGE consortium as a whole, and within eMERGE, the ROR working group really is the final transducer of many of these activities for us and to be at the leading edge of implementing genomics, whether we interact with payers or regulatory bodies, with ACMG or EGAPP, with other NHGRI activities such as ClinGen, ROR, or CSER, and with other entities that are looking at making genomic information scalable machinery that will -- and thereby -- and try to be integrated into the medical records. So I think we have a unique potential strategically positioned in this area. And my last slide is to summarize the unique features of eMERGE to address these knowledge gaps and challenges, the linkage to EHR with deep and diverse phenotypes, the diversity of clinical settings and electronic medical records, the diversity of genomic information ranging from sequencing to high-density genotypes, the ability to look at best practices for implementation, and finally a cohort at this point of more than 50,000 that includes pediatric patients. So I'm going to stop there. Male Speaker: And Larry, you can continue, even with the same microphone.

Contents

Mission

Ballotpedia's stated goal is "to inform people about politics by providing accurate and objective information about politics at all levels of government."[10] The website "provides information on initiative supporters and opponents, financial reports, litigation news, status updates, poll numbers, and more."[11] It originally was a "community-contributed web site, modeled after Wikipedia" which is now edited by paid staff. It "contains volumes of information about initiatives, referenda, and recalls."[12]

In 2008, InfoWorld called Ballotpedia one of the "Top 20 Election Day Web sites and online tools."[13]

According to the Colorado Springs Gazette in 2013, "Ballotpedia is a nonprofit wiki encyclopedia that uses nonpartisan collaboration to gather political info for sharing."[14]

History

Ballotpedia was founded by the Citizens in Charge Foundation in 2007.[15] Ballotpedia was sponsored by the Sam Adams Alliance in 2008, along with Judgepedia and Sunshine Review. In 2009, their sponsorship was transferred to the nonprofit Lucy Burns Institute, based in Middleton, Wisconsin.[15][16]

On July 9, 2013, Sunshine Review was acquired by the Lucy Burns Institute and merged into Ballotpedia.[17] Judgepedia was merged into Ballotpedia in March 2015.

In May 2018, in response to scrutiny over the misuse of Twitter by those seeking to maliciously influence elections, Twitter announced that it would partner with Ballotpedia to add special labels verifying the authenticity of political candidates running for election in the U.S.[18][19]

During the 2018 United States elections, Ballotpedia supplied Amazon Alexa with information on polling place locations and political candidates.[20]

Judgepedia

Judgepedia was an online wiki-style encyclopedia covering the American legal system.[21][22] In 2015, all content from Judgepedia was merged into Ballotpedia.[23][24] It included a database of information on state and federal courts and judges.[25][26][27]

According to its original website, the goal of Judgepedia was "to help readers discover and learn useful information about the court systems and judiciary in the United States."[28]

Judgepedia was sponsored by the Sam Adams Alliance in 2007, along with Ballotpedia and Sunshine Review.[29] In 2009, sponsorship of Judgepedia was transferred to the Lucy Burns Institute, which merged Judgepedia into Ballotpedia in March 2015.[28]

Judgepedia had a weekly publication titled Federal Courts, Empty Benches which tracked the vacancy rate for Article III federal judicial posts.[30]

Reception and studies

Ballotpedia has been mentioned in The Washington Post' politics blog, "The Fix";[31] in The Wall Street Journal;[32] and in Politico.[33]

Judgepedia has also been cited in The Washington Post[34] and its Volokh Conspiracy blog,[35] in The Wall Street Journal's Law Blog,[36] and in The New York Times' "The Caucus" politics blog.[37] The Orange County Register noted Judgepedia's coverage of Courts of Appeal and the Supreme Court.[38] Judgepedia's profile of Elena Kagan was included in the Harvard Law School Library's guide to Kagan's Supreme Court nomination and the Law Library of Congress's guide to Kagan.[39][40]

In 2015, Harvard University visiting scholar Carl Klarner conducted a study for Ballotpedia which found that state legislative elections have become less competitive over time, with 2014's elections being the least competitive elections in the past 40 years.[41]

Ballotpedia has helped spotlight the unnecessarily complex language used in various U.S. ballot measures. In 2017, with a sample of 27 issues from nine states, the group determined that, on average, ballot descriptions required a graduate-level education to understand the complex wording of issues, with the average American adult only reading at a 7th to 8th grade reading level. A Georgia State University analysis of 1200 ballot measures over a decade showed that voters were more likely to skip complex issues altogether.[42] Further, some ballot language confuses potential voters with the use of double negatives. A few states require plain-language explanations of ballot wording.[43]

In 2018, Ballotpedia, ABC News, and FiveThirtyEight collected and analyzed data on candidates in Democratic Party primaries in order to determine which types of candidates Democratic primary voters were gravitating towards.[44]

References

  1. ^ "Ballotpedia.org Traffic, Demographics and Competitors - Alexa". Alexa Internet. Retrieved 2019-01-27.
  2. ^ "BallotPedia.org WHOIS, DNS, & Domain Info - DomainTools". WHOIS. Retrieved 2016-11-12.
  3. ^ Chokshi, Niraj (November 5, 2018). "Voter Guide: How, When and Where to Vote on Tuesday". New York Times. Retrieved 19 December 2018.
  4. ^ Levine, Andrew (October 29, 2018). "New York Today: Why Don't We Have Early Voting?". New York Times. Retrieved 19 December 2018.
  5. ^ Chokshi, Niraj (September 9, 2014). "Tuesday is the last day of the state legislative primary season". Washington Post. Retrieved 8 December 2014.
  6. ^ Wisniewski, Mary; Hendee, David (January 24, 2011). "Omaha mayoral recall vote part of angry voter trend". Reuters. Retrieved 8 December 2014.
  7. ^ Dewan, Shaila (November 5, 2014). "Higher Minimum Wage Passes in 4 States; Florida Defeats Marijuana Measure". The New York Times. Retrieved 8 December 2014.
  8. ^ Morones, Alyssa (2013-08-22). "Ballotpedia Launches 'Wikipedia' for School Board Elections". Education Week. Retrieved 21 October 2013.
  9. ^ Darnay, Keith (November 3, 2014). "Find election info at the last minute". Bismarck Tribune. Retrieved 2 December 2014.
  10. ^ a b "Ballotpedia:About". Retrieved 24 February 2016.
  11. ^ Davis, Gene (August 6, 2008). "Denver's got issues: Ballot issues & you can learn more at Ballotpedia.com". Denver Daily News. Denver. Retrieved April 27, 2011.
  12. ^ Lawrence, David G. (2009). California: The Politics of Diversity. Stamford, Connecticut: Cengage Learning. p. 83. ISBN 978-0-495-57097-4.
  13. ^ Raphael, JR (November 3, 2008). "Top 20 Election Day Web sites and online tools: The best resources -- everything from widgets to mobile alerts -- to take you through the election's end". InfoWorld. Retrieved April 27, 2011.
  14. ^ McGraw, Carol (2013-10-14). "Amendment 66 deemed a big issue nationally". Colorado Springs Gazette. Archived from the original on October 22, 2013. Retrieved 11 August 2014.
  15. ^ a b Roberts, Joni; Drost, Carol; Hoover, Steven. "Ballotpedia Internet Review". Association of College & Research Libraries. American Library Association. Retrieved 13 August 2014.
  16. ^ Spillman, Benjamin (2013-07-29). "Cost to appeal Las Vegas Planning Commission decision called prohibitive". Las Vegas Review-Journal. Retrieved 21 October 2013.
  17. ^ "About Sunshine Review on Ballotpedia". 2013-07-09.
  18. ^ "Twitter to add labels to U.S. political candidates". CBS. May 23, 2018. Retrieved May 23, 2018.
  19. ^ Scola, Nancy (May 23, 2018). "Twitter to verify election candidates in the midterms". Politico. Retrieved May 23, 2018.
  20. ^ Malone Kircher, Madison (November 2, 2018). "Hey, Alexa, Who Is Winning the Election in New York?". New York Magazine. Retrieved 19 December 2018.
  21. ^ "Nonprofit Group Offers Free Judicial Profiles Online at Judgepedia.com". Metropolitan News-Enterprise. 2009-12-21. Retrieved 11 August 2014.
  22. ^ Ambrogi, Robert (October 2010). "Crowdsourcing the Law: Trends and Other Innovations". Oregon State Bar Bulletin. Oregon State Bar. Retrieved 12 August 2014.
  23. ^ Pallay, Geoff. "Ballotpedia to absorb Judgepedia". Ballotpedia. Ballotpedia. Retrieved 8 September 2015.
  24. ^ Mahtesian, Charles (2012-10-16). "The best races you've never heard of". Politico. Retrieved 11 August 2014.
  25. ^ Peoples, Lee (2010-11-06). "The Lawyer's Guide to Using and Citing Wikipedia" (PDF). Oklahoma Bar Journal. 81: 2438. Retrieved 11 August 2014.
  26. ^ Davey, Chris; Salaz, Karen (November–December 2010). "Survey Looks at New Media and the Court". Journal of the American Judicature Society. 94 (3).
  27. ^ Meckler, Mark (2012). Tea Party Patriots: The Second American Revolution. Macmillan. p. 167. ISBN 0805094377.
  28. ^ a b "Judgepedia:About". Judgepedia. Lucy Burns Institute. Archived from the original on 25 June 2014. Retrieved 11 August 2014.
  29. ^ Phillips, Kate (2008-07-19). "The Sam Adams Project". The New York Times. Retrieved 11 August 2014.
  30. ^ "Pennsylvania and Wisconsin Have Federal Courts with Highest Vacancy Rates; across Country, 9.9% of Federal Judicial Posts Are Vacant". Telecommunications Weekly. Retrieved 13 August 2014.
  31. ^ Simon, Jeff (February 3, 2014). "Lost your bid to be an 'American Idol'? Try Congress. It's easier". Washington Post. Retrieved 25 March 2014.
  32. ^ Moore, Stephen (November 5, 2013). "Ten Election Day Ballot Measures". Wall Street Journal. Retrieved 25 March 2014.
  33. ^ Mahtesian, Charles (August 8, 2012). "A rough night for incumbents". Politico. Retrieved 25 March 2014.
  34. ^ Markon, Jerry (2011-01-18). "Slain federal judge John Roll was at the center of Arizona's immigration debate". Washington Post. Retrieved 11 August 2014.
  35. ^ Volokh, Eugene (2014-04-25). "Judge sues accuser for libel, demands to see accuser's evidence". Washington Post. Retrieved 11 August 2014.
  36. ^ Koppel, Nathan (2010-06-22). "New Orleans Judge Blocks Offshore Drilling Ban". Wall Street Journal. Retrieved 11 August 2014.
  37. ^ Shear, Michael (January 8, 2011). "Representative Giffords Shot". The New York Times. Retrieved 11 August 2014.
  38. ^ Seiler, John (2010-10-22). "John Seiler: Appellate judges aplenty on ballot". Orange County Register. Retrieved 11 August 2014.
  39. ^ "Guide to the nomination of Elena Kagan to the Supreme Court of the United States". Harvard Law School Library. Harvard Law School. Retrieved 11 August 2014.
  40. ^ "Elena Kagan". Law Library of Congress. Library of Congress. Retrieved 11 August 2014.
  41. ^ Wilson, Reid (May 7, 2015). "Study: State elections becoming less competitive". Washington Post. Retrieved 14 May 2015.
  42. ^ Wogan, J.B. (2017-11-06). "Unless You Went to Grad School, You Probably Won't Understand What's on Your Ballot". www.governing.com. Retrieved 2018-10-22.
  43. ^ Collins, Steve (2017-11-16). "Study: Maine ballot questions too confusing even for college graduates - Lewiston Sun Journal". Lewiston Sun Journal. Retrieved 2018-10-22.
  44. ^ Conroy, Meredith; Nguyen, Mai; Rakich, Nathaniel (August 10, 2018). "We Researched Hundreds Of Races. Here's Who Democrats Are Nominating". FiveThirtyEight. Retrieved 19 December 2018.

External links

This page was last edited on 2 June 2019, at 07:19
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