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1. Implementation-effectiveness trial of systematic family health history based risk assessment and impact on clinical disease prevention and surveillance activities

Author

R. Ryanne Wu, Rachel A. Myers, Joan Neuner, Catherine McCarty, Irina V. Haller, Melissa Harry, Kimberly G. Fulda, David Dimmock, Tejinder Rakhra-Burris, Adam Buchanan, Geoffrey S. Ginsburg, and Lori A. Orlando

Subjects
Hybrid implementation-effectiveness, Risk assessment, Clinical decision support, Family health history, Precision medicine, Health belief model, Public aspects of medicine, RA1-1270
Abstract

Abstract Background Systematically assessing disease risk can improve population health by identifying those eligible for enhanced prevention/screening strategies. This study aims to determine the clinical impact of a systematic risk assessment in diverse primary care populations. Methods Hybrid implementation-effectiveness trial of a family health history-based health risk assessment (HRA) tied to risk-based guideline recommendations enrolling from 2014–2017 with 12 months of post-intervention survey data and 24 months of electronic medical record (EMR) data capture. Setting:19 primary care clinics at four geographically and culturally diverse U.S. healthcare systems. Participants: any English or Spanish-speaking adult with an upcoming appointment at an enrolling clinic. Methods: A personal and family health history based HRA with integrated guideline-based clinical decision support (CDS) was completed by each participant prior to their appointment. Risk reports were provided to patients and providers to discuss at their clinical encounter. Outcomes: provider and patient discussion and provider uptake (i.e. ordering) and patient uptake (i.e. recommendation completion) of CDS recommendations. Measures: patient and provider surveys and EMR data. Results One thousand eight hundred twenty nine participants (mean age 56.2 [SD13.9], 69.6% female) completed the HRA and had EMR data available for analysis. 762 (41.6%) received a recommendation (29.7% for genetic counseling (GC); 15.2% for enhanced breast/colon cancer screening). Those with recommendations frequently discussed disease risk with their provider (8.7%-38.2% varied by recommendation, p-values ≤ 0.004). In the GC subgroup, provider discussions increased referrals to counseling (44.4% with vs. 5.9% without, P

Published
2022
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2. An electronic family health history tool to identify and manage patients at increased risk for colorectal cancer: protocol for a randomized controlled trial

Author

Karen M. Goldstein, Deborah A. Fisher, R. Ryanne Wu, Lori A. Orlando, Cynthia J. Coffman, Janet M. Grubber, Tejinder Rakhra-Burris, Virginia Wang, Maren T. Scheuner, Nina Sperber, Santanu K. Datta, Richard E. Nelson, Elizabeth Strawbridge, Dawn Provenzale, Elizabeth R. Hauser, and Corrine I. Voils

Subjects
Risk assessment, Family history, Cancer screening, Colorectal cancer, Medicine (General), R5-920
Abstract

Abstract Background Colorectal cancer is the fourth most commonly diagnosed cancer in the United States. Approximately 3–10% of the population has an increased risk for colorectal cancer due to family history and warrants more frequent or intensive screening. Yet,

Published
2019
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3. Proceedings from the 9th annual conference on the science of dissemination and implementation

Author

David Chambers, Lisa Simpson, Gila Neta, Ulrica von Thiele Schwarz, Antoinette Percy-Laurry, Gregory A. Aarons, Ross Brownson, Amanda Vogel, Shannon Wiltsey Stirman, Kenneth Sherr, Rachel Sturke, Wynne E. Norton, Allyson Varley, Cynthia Vinson, Lisa Klesges, Suzanne Heurtin-Roberts, M. Rashad Massoud, Leighann Kimble, Arne Beck, Claire Neely, Jennifer Boggs, Carmel Nichols, Wen Wan, Erin Staab, Neda Laiteerapong, Nathalie Moise, Ravi Shah, Susan Essock, Margaret Handley, Amy Jones, Jay Carruthers, Karina Davidson, Lauren Peccoralo, Lloyd Sederer, Todd Molfenter, Ashley Scudder, Sarah Taber-Thomas, Kristen Schaffner, Amy Herschell, Eva Woodward, Jeffery Pitcock, Mona Ritchie, JoAnn Kirchner, Julia E. Moore, Sobia Khan, Shusmita Rashid, Jamie Park, Melissa Courvoisier, Sharon Straus, Daniel Blonigen, Allison Rodriguez, Luisa Manfredi, Andrea Nevedal, Joel Rosenthal, David Smelson, Christine Timko, Nicole Stadnick, Jennifer Regan, Miya Barnett, Anna Lau, Lauren Brookman-Frazee, Erick Guerrero, Karissa Fenwick, Yinfei Kong, Gregory Aarons, Rebecca Lengnick-Hall, Benjamin Henwood, Nina Sayer, Craig Rosen, Robert Orazem, Brandy Smith, Lindsey Zimmerman, David Lounsbury, Rachel Kimerling, Jodie A. Trafton, Steven Lindley, Rahul Bhargava, Hal Roberts, Laura Gibson, Gabriel J. Escobar, Vincent Liu, Benjamin Turk, Arona Ragins, Patricia Kipnis, Ashley Ketterer Gruszkowski, Michael W. Kennedy, Emily Rentschler Drobek, Lior Turgeman, Aleksandra Sasha Milicevic, Terrence L. Hubert, Larissa Myaskovsky, Youxu C. Tjader, Robert J. Monte, Kathryn G. Sapnas, Edmond Ramly, Diane R Lauver, Christie M Bartels, Shereef Elnahal, Andrea Ippolito, Hillary Peabody, Carolyn Clancy, Randall Cebul, Thomas Love, Douglas Einstadter, Shari Bolen, Brook Watts, Vera Yakovchenko, Angela Park, William Lukesh, Donald R. Miller, David Thornton, Mari-Lynn Drainoni, Allen L. Gifford, Shawna Smith, Julia Kyle, Mark S Bauer, Daniel Eisenberg, Celeste Liebrecht, Michelle Barbaresso, Amy Kilbourne, Elyse Park, Giselle Perez, Jamie Ostroff, Sarah Greene, Michael Parchman, Brian Austin, Eric Larson, Stefanie Ferreri, Chris Shea, Megan Smith, Kea Turner, Jennifer Bacci, Kyle Bigham, Geoffrey Curran, Caity Frail, Cory Hamata, Terry Jankowski, Wendy Lantaff, Melissa Somma McGivney, Margie Snyder, Megan McCullough, Chris Gillespie, Beth Ann Petrakis, Ellen Jones, Carol VanDeusen Lukas, Adam Rose, Sarah J. Shoemaker, Jeremy Thomas, Benjamin Teeter, Holly Swan, Appathurai Balamurugan, Meghan Lane-Fall, Rinad Beidas, Laura Di Taranti, Sruthi Buddai, Enrique Torres Hernandez, Jerome Watts, Lee Fleisher, Frances Barg, Isomi Miake-Lye, Tanya Olmos, Emmeline Chuang, Hector Rodriguez, Gerald Kominski, Becky Yano, Stephen Shortell, Mary Hook, Linda Fleisher, Alexander Fiks, Katie Halkyard, Rachel Gruver, Emily Sykes, Kimberly Vesco, Kate Beadle, Joanna Bulkley, Ashley Stoneburner, Michael Leo, Amanda Clark, Joan Smith, Christopher Smyser, Maggie Wolf, Shamik Trivedi, Brian Hackett, Rakesh Rao, F. Sessions Cole, Rose McGonigle, Ann Donze, Enola Proctor, Amit Mathur, Emmanuela Gakidou, Stephen Gloyd, Carolyn Audet, Jose Salato, Sten Vermund, Rivet Amico, Stephanie Smith, Beatha Nyirandagijimana, Hildegarde Mukasakindi, Christian Rusangwa, Molly Franke, Giuseppe Raviola, Matthew Cummings, Elijah Goldberg, Savio Mwaka, Olive Kabajaasi, Adithya Cattamanchi, Achilles Katamba, Shevin Jacob, Nathan Kenya-Mugisha, J. Lucian Davis, Julie Reed, Rohit Ramaswamy, Gareth Parry, Sylvia Sax, Heather Kaplan, Keng-yen Huang, Sabrina Cheng, Susan Yee, Kimberly Hoagwood, Mary McKay, Donna Shelley, Gbenga Ogedegbe, Laurie Miller Brotman, Roman Kislov, John Humphreys, Gill Harvey, Paul Wilson, Robert Lieberthal, Colleen Payton, Mona Sarfaty, George Valko, Rendelle Bolton, Christine Hartmann, Nora Mueller, Sally K. Holmes, Barbara Bokhour, Sarah Ono, Benjamin Crabtree, Leah Gordon, William Miller, Bijal Balasubramanian, Leif Solberg, Deborah Cohen, Kate McGraw, Andrew Blatt, Demietrice Pittman, Helen Kales, Dan Berlowitz, Teresa Hudson, Christian Helfrich, Erin Finley, Ashley Garcia, Kristen Rosen, Claudina Tami, Don McGeary, Mary Jo Pugh, Jennifer Sharpe Potter, Krysttel Stryczek, David Au, Steven Zeliadt, George Sayre, Jennifer Leeman, Allison Myers, Jennifer Grant, Mary Wangen, Tara Queen, Alexandra Morshed, Elizabeth Dodson, Rachel Tabak, Ross C. Brownson, R. Chris Sheldrick, Thomas Mackie, Justeen Hyde, Laurel Leslie, Itzhak Yanovitzky, Matthew Weber, Nicole Gesualdo, Teis Kristensen, Cameo Stanick, Heather Halko, Caitlin Dorsey, Byron Powell, Bryan Weiner, Cara Lewis, Patricia Carreno, Kera Mallard, Tasoula Masina, Candice Monson, Taren Swindle, Zachary Patterson, Leanne Whiteside-Mansell, Rochelle Hanson, Benjamin Saunders, Sonja Schoenwald, Angela Moreland, Sarah Birken, Justin Presseau, David Ganz, Brian Mittman, Deborah Delevan, Jennifer N. Hill, Sara Locatelli, Gemmae Fix, Jeffrey Solomon, Sherri L. Lavela, Victoria Scott, Jonathan Scaccia, Kassy Alia, Brittany Skiles, Abraham Wandersman, Anne Sales, Megan Roberts, Amy Kennedy, Muin J. Khoury, Nina Sperber, Lori Orlando, Janet Carpenter, Larisa Cavallari, Joshua Denny, Amanda Elsey, Fern Fitzhenry, Yue Guan, Carol Horowitz, Julie Johnson, Ebony Madden, Toni Pollin, Victoria Pratt, Tejinder Rakhra-Burris, Marc Rosenman, Corrine Voils, Kristin Weitzel, Ryanne Wu, Laura Damschroder, Christine Lu, Rachel Ceccarelli, Kathleen M. Mazor, Ann Wu, Alanna Kulchak Rahm, Adam H. Buchanan, Marci Schwartz, Cara McCormick, Kandamurugu Manickam, Marc S. Williams, Michael F. Murray, Ngoc-Cam Escoffery, Erin Lebow-Skelley, Hallie Udelson, Elaine Böing, Maria E. Fernandez, Richard J. Wood, Patricia Dolan Mullen, Jenita Parekh, Valerie Caldas, Elizabeth A. Stuart, Shalynn Howard, Gilo Thomas, Jacky M. Jennings, Jennifer Torres, Christine Markham, Ross Shegog, Melissa Peskin, Stephanie Craig Rushing, Amanda Gaston, Gwenda Gorman, Cornelia Jessen, Jennifer Williamson, Dianne Ward, Amber Vaughn, Ellie Morris, Stephanie Mazzucca, Regan Burney, Shoba Ramanadhan, Sara Minsky, Vilma Martinez-Dominguez, Kasisomayajula Viswanath, Megan Barker, Myra Fahim, Arezoo Ebnahmady, Rosa Dragonetti, Peter Selby, Margaret Farrell, Jordan Tompkins, Wynne Norton, Kaelin Rapport, Margaret Hargreaves, Rebekka Lee, Gina Kruse, Charles Deutsch, Emily Lanier, Ashley Gray, Aaron Leppin, Lori Christiansen, Karen Schaepe, Jason Egginton, Megan Branda, Charlene Gaw, Sara Dick, Victor Montori, Nilay Shah, Ariella Korn, Peter Hovmand, Karen Fullerton, Nancy Zoellner, Erin Hennessy, Alison Tovar, Ross Hammond, Christina Economos, Christi Kay, Julie Gazmararian, Emily Vall, Patricia Cheung, Padra Franks, Shannon Barrett-Williams, Paul Weiss, Erica Hamilton, Luana Marques, Louise Dixon, Emily Ahles, Sarah Valentine, Derri Shtasel, Ruben Parra-Cardona, Mary Northridge, Rucha Kavathe, Jennifer Zanowiak, Laura Wyatt, Hardayal Singh, Nadia Islam, Madalena Monteban, Darcy Freedman, Kimberly Bess, Colleen Walsh, Kristen Matlack, Susan Flocke, Heather Baily, Samantha Harden, NithyaPriya Ramalingam, VCE Physical Activity Leadership Team, Rachel Gold, Erika Cottrell, Celine Hollombe, Katie Dambrun, Arwen Bunce, Mary Middendorf, Marla Dearing, Stuart Cowburn, Ned Mossman, Gerry Melgar, Suellen Hopfer, Michael Hecht, Anne Ray, Michelle Miller-Day, Rhonda BeLue, Greg Zimet, Eve-Lynn Nelson, Sandy Kuhlman, Gary Doolittle, Hope Krebill, Ashley Spaulding, Theodore Levin, Michael Sanchez, Molly Landau, Patricia Escobar, Nadia Minian, Aliya Noormohamed, Laurie Zawertailo, Dolly Baliunas, Norman Giesbrecht, Bernard Le Foll, Andriy Samokhvalov, Zachary Meisel, Daniel Polsky, Bruce Schackman, Julia Mitchell, Kaitlyn Sevarino, Sarah Gimbel, Moses Mwanza, Marie Paul Nisingizwe, Catherine Michel, Lisa Hirschhorn, Mahrukh Choudhary, Della Thonduparambil, Paul Meissner, Hilary Pinnock, Melanie Barwick, Christopher Carpenter, Sandra Eldridge, Gonzalo Grandes-Odriozola, Chris Griffiths, Jo Rycroft-Malone, Elizabeth Murray, Anita Patel, Aziz Sheikh, Stephanie J. C. Taylor, Martin Guilliford, Gemma Pearce, Diane Korngiebel, Kathleen West, Wylie Burke, Peggy Hannon, Jeffrey Harris, Kristen Hammerback, Marlana Kohn, Gary K. C. Chan, Riki Mafune, Amanda Parrish, Shirley Beresford, K. Joanne Pike, Rachel Shelton, Lina Jandorf, Deborah Erwin, Thana-Ashley Charles, Laura-Mae Baldwin, Brooke Ike, Jacqueline Fickel, Jason Lind, Diane Cowper, Marguerite Fleming, Amy Sadler, Melinda Dye, Judith Katzburg, Michael Ong, Sarah Tubbesing, Molly Simmons, Autumn Harnish, Sonya Gabrielian, Keith McInnes, Jeffrey Smith, John Ferrand, Elisa Torres, Amy Green, Angela R. Bradbury, Linda J. Patrick-Miller, Brian L. Egleston, Susan M. Domchek, Olufunmilayo I. Olopade, Michael J. Hall, Mary B. Daly, Generosa Grana, Pamela Ganschow, Dominique Fetzer, Amanda Brandt, Rachelle Chambers, Dana F. Clark, Andrea Forman, Rikki S. Gaber, Cassandra Gulden, Janice Horte, Jessica Long, Terra Lucas, Shreshtha Madaan, Kristin Mattie, Danielle McKenna, Susan Montgomery, Sarah Nielsen, Jacquelyn Powers, Kim Rainey, Christina Rybak, Christina Seelaus, Jessica Stoll, Jill Stopfer, Xinxin Shirley Yao, Michelle Savage, Edward Miech, Teresa Damush, Nicholas Rattray, Jennifer Myers, Barbara Homoya, Kate Winseck, Carrie Klabunde, Deb Langer, Avi Aggarwal, Elizabeth Neilson, Lara Gunderson, Marla Gardner, Liam O’Sulleabhain, and Candyce Kroenke

Subjects
Medicine (General), R5-920
Published
2017
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4. Review of State Comprehensive Cancer Control Plans for Genomics Content

Author

Robert C. Millikan, DVM, PhD, Tejinder Rakhra-Burris, MA, Erin Shaughnessy Zuiker, MPH, and Debra E. Irwin, PhD, MSPH

Subjects
genomics, public health, chronic disease prevention, cancer, Public aspects of medicine, RA1-1270
Abstract

Introduction The goals of this study were to determine U.S. states with Comprehensive Cancer Control plans that include genomics in some capacity and to review successes with and barriers to implementation of genomics-related cancer control initiatives. Methods This study was conducted in two phases. Phase one included a content analysis of written state Comprehensive Cancer Control plans (n = 30) for terms related to genomics, or genomic components (n = 18). The second phase involved telephone interviews with the Comprehensive Cancer Control plan coordinators in states with plans that contained genomic components (n = 16). The interview was designed to gather more detailed information about the genomics-related initiatives within the states Comprehensive Cancer Control plan and the successes with and barriers to plan implementation, as defined by each state. Results Eighteen of the 30 Comprehensive Cancer Control plans analyzed contained genomics components. We noted a large variability among these 18 plans in the types of genomics components included. Nine (56%) of the 16 states interviewed had begun to implement the genomics components in their plan. Most states emphasized educating health care providers and the public about the role of genomics in cancer control. Many states consider awareness of family history to be an important aspect of their Comprehensive Cancer Control plan. Approximately 67% of states with family history components in their plans had begun to implement these goals. Virtually all states reported they would benefit from additional training in cancer genetics and general public health genomics. Conclusion The number of states incorporating genomics into their Comprehensive Cancer Control plans is increasing. Family history is a public health application of genomics that could be implemented more fully into Comprehensive Cancer Control plans.

Published
2005

5. Returning integrated genomic risk and clinical recommendations: the eMERGE study

Author

Jodell E. Linder, Aimee Allworth, Sarah T. Bland, Pedro J. Caraballo, Rex L. Chisholm, Ellen Wright Clayton, David R. Crosslin, Ozan Dikilitas, Alanna DiVietro, Edward D. Esplin, Sophie Forman, Robert R. Freimuth, Adam S. Gordon, Richard Green, Maegan V. Harden, Ingrid A. Holm, Gail P. Jarvik, Elizabeth W. Karlson, Sofia Labrecque, Niall J. Lennon, Nita A. Limdi, Kathleen F. Mittendorf, Shawn N. Murphy, Lori Orlando, Cynthia A. Prows, Luke V. Rasmussen, Laura Rasmussen-Torvik, Robb Rowley, Konrad Teodor Sawicki, Tara Schmidlen, Shannon Terek, David Veenstra, Digna R. Velez Edwards, Devin Absher, Noura S. Abul-Husn, Jorge Alsip, Hana Bangash, Mark Beasley, Jennifer E. Below, Eta S. Berner, James Booth, Wendy K. Chung, James J. Cimino, John Connolly, Patrick Davis, Beth Devine, Stephanie M. Fullerton, Candace Guiducci, Melissa L. Habrat, Heather Hain, Hakon Hakonarson, Margaret Harr, Eden Haverfield, Valentina Hernandez, Christin Hoell, Martha Horike-Pyne, George Hripcsak, Marguerite R. Irvin, Christopher Kachulis, Dean Karavite, Eimear E. Kenny, Atlas Khan, Krzysztof Kiryluk, Bruce Korf, Leah Kottyan, Iftikhar J. Kullo, Katie Larkin, Cong Liu, Edyta Malolepsza, Teri A. Manolio, Thomas May, Elizabeth M. McNally, Frank Mentch, Alexandra Miller, Sean D. Mooney, Priyanka Murali, Brenda Mutai, Naveen Muthu, Bahram Namjou, Emma F. Perez, Megan J. Puckelwartz, Tejinder Rakhra-Burris, Dan M. Roden, Elisabeth A. Rosenthal, Seyedmohammad Saadatagah, Maya Sabatello, Dan J. Schaid, Baergen Schultz, Lynn Seabolt, Gabriel Q. Shaibi, Richard R. Sharp, Brian Shirts, Maureen E. Smith, Jordan W. Smoller, Rene Sterling, Sabrina A. Suckiel, Jeritt Thayer, Hemant K. Tiwari, Susan B. Trinidad, Theresa Walunas, Wei-Qi Wei, Quinn S. Wells, Chunhua Weng, Georgia L. Wiesner, Ken Wiley, Josh F. Peterson, Adam Gordon, Agboade Sobowale, Akshar Patel, Alanna Strong, Alborz Sherafati, Alborz Sherfati, Alex Bick, Alka Chandel, Alyssa Rosenthal, Amit Khera, Amy Kontorovich, Andrew Beck, Andy Beck, Angelica Espinoza, Anna Lewis, Anya Prince, Ayuko Iverson, Bahram Namjou Khales, Barbara Benoit, Becca Hernan, Ben Kallman, Ben Kerman, Ben Shoemaker, Benjamin Satterfield, Bethany Etheridge, Blake Goff, Bob Freimuth, Bob Grundmeier, Brenae Collier, Brett Harnett, Brian Chang, Brian Piening, Brittney Davis, Candace Patterson, Carmen Demetriou, Casey Ta, Catherine Hammack, Catrina Nelson, Caytie Gascoigne, Chad Dorn, Chad Moretz, Chris Kachulis, Christie Hoell, Christine Cowles, Christoph Lange, Cindy Prows, Cole Brokamp, Courtney Scherr, Crystal Gonzalez, Cynthia Ramirez, Daichi Shimbo, Dan Roden, Daniel Schaid, Dave Kaufman, David Crosslin, David Kochan, Davinder Singh, Debbie Abrams, Digna Velez Edwards, Eduardo Morales, Edward Esplin, Ehsan Alipour, Eimear Kenny, Elisabeth Rosenthal, Eliza Duvall, Elizabeth McNally, Elizabeth Bhoj, Elizabeth Cohn, Elizabeth Hibler, Elizabeth Karlson, Ellen Clayton, Emily Chesnut, Emily DeFranco, Emily Gallagher, Emily Soper, Emma Perez, Erin Cash, Eta Berner, Fei Wang, Firas Wehbe, Francisco Ricci, Gabriel Shaibi, Gail Jarvik, George Hahn, Georgia Wiesner, Gillian Belbin, Gio Davogustto, Girish Nadkarni, Haijun Qiu, Hannah Beasley, Hao Liu, Heide Aungst, Hemant Tiwari, Hillary Duckham, Hope Thomas, Iftikhar Kullo, Ingrid Holm, Isabelle Allen, Iuliana Ionita-Laza, Jacklyn Hellwege, Jacob Petrzelka, Jacqueline Odgis, Jahnavi Narula, Jake Petrzelka, Jalpa Patel, James Cimino, James Meigs, James Snyder, Janet Olson, Janet Zahner, Jeff Pennington, Jen Pacheco, Jennifer Allen Pacheco, Jennifer Morse, Jeremy Corsmo, Jim Cimino, Jingheng Chen, Jocelyn Fournier, Jodell Jackson, Joe Glessner, Joel Pacyna, Johanna Smith, John Lynch, John Shelley, Jonathan Mosley, Jordan Nestor, Jordan Smoller, Joseph Kannry, Joseph Sutton, Josh Peterson, Joshua Smith, Julia Galasso, Julia Smith, Julia Wynn, Justin Gundelach, Justin Starren, Karmel Choi, Kate Mittendorf, Katherine Anderson, Katherine Bonini, Kathleen Leppig, Kathleen Muenzen, Kelsey Stuttgen, Kenny Nguyen, Kevin Dufendach, Kiley Atkins, Konrad Sawicki, Kristjan Norland, Laura Beskow, Li Hsu, Lifeng Tian, Lisa Mahanta, Lisa Martin, Lisa Wang, Lizbeth Gomez, Lorenzo Thompson, Lucas Richter, Luke Rasmussen, Lynn Petukhova, Madison O’Brien, Maegan Harden, Malia Fullerton, Marta Guindo, Martha Horike, Marwah Abdalla, Marwan Hamed, Mary Beth Terry, Mary Maradik, Matt Wyatt, Matthew Davis, Matthew Lebo, Maureen Smith, Maya del Rosario, Meckenzie Behr, Meg Roy-Puckelwartz, Mel Habrat, Melanie Myers, Meliha Yetisgen, Merve Iris, Michael DaSilva, Michael Preuss, Michelle McGowan, Mingjian Shi, Minoli Perera, Minta Thomas, Mitch Elkind, Mohammad Abbass, Mohammad Saadatagah, Molly Hess, Molly Maradik, Nataraja 'RJ' Vaitinadin, Nataraja Vaitinadin, Neil Netherly, Niall Lennon, Ning Shang, Nita Limdi, Noah Forrest, Noheli Romero, Nora Robinson, Noura Abul-Husn, Omar Elsekaily, Patricia Kovatch, Paul Appelbaum, Paul Francaviglia, Paul O’Reilly, Paulette Chandler, Pedro Caraballo, Peter Tarczy-Hornoch, Pierre Shum, Priya Marathe, Qiping Feng, Quinn Wells, Rachel Atchley, Radhika Narla, Rene Barton, Rex Chisholm, Richard Sharp, Riki Peters, Rita Kukafka, Robert Freimuth, Robert Green, Robert Winter, Roger Mueller, Ruth Loos, Ryan Irvin, Sabrina Suckiel, Sajjad Hussain, Samer Sharba, Sandy Aronson, Sarah Jones, Sarah Knerr, Scott Nigbur, Scott Weiss, Sean Mooney, Sharon Aufox, Sharon Nirenberg, Shawn Murphy, Sheila O’Byrne, Shing Wang (Sam) Choi, Sienna Aguilar, S.T. Bland, Stefanie Rodrigues, Stephanie Ledbetter, Stephanie Rutledge, Stuart James Booth, Su Xian, Susan Brown Trinidad, Suzanne Bakken, Teri Manolio, Tesfaye Mersha, Thevaa Chandereng, Tian Ge, Todd Edwards, Tom Kaszemacher, Valerie Willis, Vemi Desai, Vimi Desai, Virginia Lorenzi, Vivian Gainer, Wendy Chung, Wu-Chen Su, Xiao Chang, Yiqing Zhao, Yuan Luo, and Yufeng Shen

Subjects
Genetics (clinical)
Abstract

Assessing the risk of common, complex diseases requires consideration of clinical risk factors as well as monogenic and polygenic risks, which in turn may be reflected in family history. Returning risks to individuals and providers may influence preventive care or use of prophylactic therapies for those individuals at high genetic risk.To enable integrated genetic risk assessment, the eMERGE (electronic MEdical Records and GEnomics) network is enrolling 25,000 diverse individuals in a prospective cohort study across 10 sites. The network developed methods to return cross-ancestry polygenic risk scores (PRS), monogenic risks, family history, and clinical risk assessments via a Genome Informed Risk Assessment (GIRA) report and will assess uptake of care recommendations after return of results.GIRAs include summary care recommendations for 11 conditions, education pages, and clinical laboratory reports. The return of high-risk GIRA to individuals and providers includes guidelines for care and lifestyle recommendations. Assembling the GIRA required infrastructure and workflows for ingesting and presenting content from multiple sources. Recruitment began in February 2022.Return of a novel report for communicating monogenic, polygenic, and family history based risk factors will inform the benefits of integrated genetic risk assessment for routine health care.

Published
2022

6. Strategies to Integrate Genomic Medicine into Clinical Care: Evidence from the IGNITE Network

Author

Kenneth D. Levy, Amanda R. Elsey, Josh F. Peterson, Todd C. Skaar, Nina R. Sperber, Tejinder Rakhra-Burris, Carol R. Horowitz, Olivia M. Dong, Lori A. Orlando, Toni I. Pollin, Geoffrey S. Ginsburg, Michelle A. Ramos, Megan C. Roberts, Paul R. Dexter, Henry H. Ong, and Julie A. Johnson

Subjects
Typology, clinical decision support, Knowledge management, Computer science, Psychological intervention, Medicine (miscellaneous), Clinical decision support system, Article, 03 medical and health sciences, 0302 clinical medicine, Genomic medicine, 030212 general & internal medicine, Clinical care, 030304 developmental biology, 0303 health sciences, implementation science, Operationalization, business.industry, fungi, food and beverages, Precision medicine, genomic medicine, Pharmacogenomics, Medicine, business
Abstract

The complexity of genomic medicine can be streamlined by implementing some form of clinical decision support (CDS) to guide clinicians in how to use and interpret personalized data, however, it is not yet clear which strategies are best suited for this purpose. In this study, we used implementation science to identify common strategies for applying provider-based CDS interventions across six genomic medicine clinical research projects funded by an NIH consortium. Each project’s strategies were elicited via a structured survey derived from a typology of implementation strategies, the Expert Recommendations for Implementing Change (ERIC), and follow-up interviews guided by both implementation strategy reporting criteria and a planning framework, RE-AIM, to obtain more detail about implementation strategies and desired outcomes. We found that, on average, the three pharmacogenomics implementation projects used more strategies than the disease-focused projects. Overall, projects had four implementation strategies in common, however, operationalization of each differed in accordance with each study’s implementation outcomes. These four common strategies may be important for precision medicine program implementation, and pharmacogenomics may require more integration into clinical care. Understanding how and why these strategies were successfully employed could be useful for others implementing genomic or precision medicine programs in different contexts.

Published
2021

7. S270 Family History Screening Tool Reveals Gaps in Colorectal Cancer Screening and Surveillance

Author

Lori A. Orlando, Donna Niedzwiecki, Katherine S. Garman, Tejinder Rakhra-Burris, Brendon M. O’Connell, Erin J. Song, R. Ryanne Wu, Brian Sullivan, Rachel A. Myers, and Alice Parish

Subjects
medicine.medical_specialty, Hepatology, business.industry, Colorectal cancer screening, Family medicine, Gastroenterology, Medicine, Screening tool, Family history, business
Published
2021
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8. Developing a Common Framework for Evaluating the Implementation of Genomic Medicine Interventions in Clinical Care: The IGNITE Network’s Common Measures Working Group

Author

Tejinder Rakhra-Burris, Carol R. Horowitz, Nina R. Sperber, Michelle A. Ramos, Laura J. Damschroder, Corrine I. Voils, Lori A. Orlando, Rachel A. Myers, Toni I. Pollin, Kenneth D. Levy, Mia A. Levy, Caitrin W. McDonough, Ebony B. Madden, Yue Guan, Stephen E. Kimmel, R. Ryanne Wu, and Marshall Nichols

Subjects
Male, Knowledge management, MEDLINE, Psychological intervention, Field (computer science), Article, 03 medical and health sciences, 0302 clinical medicine, Resource (project management), Surveys and Questionnaires, Humans, Medicine, 030212 general & internal medicine, consolidated framework, Precision Medicine, implementation, Genetics (clinical), Structure (mathematical logic), Data collection, business.industry, IGNITE, Environmental resource management, Genomics, Precision medicine, 3. Good health, common measures, genomic medicine, 030220 oncology & carcinogenesis, Female, Implementation research, business, Delivery of Health Care
Abstract

Purpose Implementation research provides a structure for evaluating the clinical integration of genomic medicine interventions. This paper describes the Implementing GeNomics In PracTicE (IGNITE) Network’s efforts to promote: 1) a broader understanding of genomic medicine implementation research; and 2) the sharing of knowledge generated in the network. Methods To facilitate this goal the IGNITE Network Common Measures Working Group (CMG) members adopted the Consolidated Framework for Implementation Research (CFIR) to guide their approach to: identifying constructs and measures relevant to evaluating genomic medicine as a whole, standardizing data collection across projects, and combining data in a centralized resource for cross network analyses. Results CMG identified ten high-priority CFIR constructs as important for genomic medicine. Of those, eight didn’t have standardized measurement instruments. Therefore, we developed four survey tools to address this gap. In addition, we identified seven high-priority constructs related to patients, families, and communities that did not map to CFIR constructs. Both sets of constructs were combined to create a draft genomic medicine implementation model. Conclusion We developed processes to identify constructs deemed valuable for genomic medicine implementation and codified them in a model. These resources are freely available to facilitate knowledge generation and sharing across the field.

Published
2017

9. An electronic family health history tool to identify and manage patients at increased risk for colorectal cancer: protocol for a randomized controlled trial

Author

Deborah A. Fisher, Virginia Wang, Nina R. Sperber, Corrine I. Voils, Dawn Provenzale, Elizabeth R. Hauser, Elizabeth Strawbridge, Cynthia J. Coffman, Richard E. Nelson, Janet M. Grubber, Maren T. Scheuner, Lori A. Orlando, Karen M. Goldstein, Tejinder Rakhra-Burris, R. Ryanne Wu, and Santanu K. Datta

Subjects
Male, Aging, Comparative Effectiveness Research, Medicine (miscellaneous), Cardiorespiratory Medicine and Haematology, Study Protocol, 0302 clinical medicine, 7.1 Individual care needs, Risk Factors, Cancer screening, Health care, Medicine, Multicenter Studies as Topic, Electronic Health Records, Pharmacology (medical), 030212 general & internal medicine, Family history, Medical History Taking, Early Detection of Cancer, Randomized Controlled Trials as Topic, Cancer, education.field_of_study, lcsh:R5-920, Middle Aged, Health Services, Prognosis, Colo-Rectal Cancer, United States Department of Veterans Affairs, 030220 oncology & carcinogenesis, Female, Risk assessment, lcsh:Medicine (General), Colorectal Neoplasms, Adult, medicine.medical_specialty, Referral, Population, Clinical Trials and Supportive Activities, Clinical Sciences, Clinical decision support system, Risk Assessment, Decision Support Techniques, 7.3 Management and decision making, 03 medical and health sciences, Predictive Value of Tests, Clinical Research, General & Internal Medicine, Genetics, Humans, Genetic Testing, education, Veterans Affairs, business.industry, Prevention, Colorectal cancer, United States, Good Health and Well Being, Cardiovascular System & Hematology, Family medicine, Management of diseases and conditions, business, Digestive Diseases
Abstract

Background Colorectal cancer is the fourth most commonly diagnosed cancer in the United States. Approximately 3–10% of the population has an increased risk for colorectal cancer due to family history and warrants more frequent or intensive screening. Yet, Methods In this ongoing randomized controlled trial, primary care providers at the Durham Veterans Affairs Health Care System and the Madison VA Medical Center are randomized to immediate intervention or wait-list control. Veterans are eligible if assigned to enrolled providers, have an upcoming primary care appointment, and have no conditions that would place them at increased risk for colorectal cancer (such as personal history, adenomatous polyps, or inflammatory bowel disease). Those with a recent lower endoscopy (e.g. colonoscopy, sigmoidoscopy) are excluded. Immediate intervention patients put their family health history information into a web-based platform, MeTree, which provides both patient- and provider-facing decision support reports. Wait-list control patients access MeTree 12 months post-consent. The primary outcome is the risk-concordant colorectal cancer screening referral rate obtained via chart review. Secondary outcomes include patient completion of risk management recommendations (e.g. colonoscopy) and referral for genetic consultation. We will also conduct an economic analysis and an assessment of providers’ experience with MeTree clinical decision support recommendations to inform future implementation efforts if the intervention is found to be effective. Discussion This trial will assess the feasibility and effectiveness of patient-collected family health history linked to decision support to promote risk-appropriate screening in a large healthcare system such as the Department of Veterans Affairs. Trial registration ClinicalTrials.gov, NCT02247336. Registered on 25 September 2014.

Published
2019

10. ID: 3524478 THE UTILITY OF FAMILY HISTORY AS A RISK FACTOR IN IDENTIFYING PATIENTS WHO WOULD BENEFIT FROM SCREENING FOR BARRETT’S ESOPHAGUS AND ESOPHAGEAL ADENOCARCINOMA

Author

Rebekah Ryanne Wu, Lori A. Orlando, Donna Niedzwiecki, Rachel A. Myers, Alice Parish, Erin J. Song, Brian Sullivan, Katherine S. Garman, Tejinder Rakhra-Burris, and Brendon M. O’Connell

Subjects
Oncology, medicine.medical_specialty, business.industry, Barrett's esophagus, Internal medicine, Gastroenterology, medicine, Esophageal adenocarcinoma, Radiology, Nuclear Medicine and imaging, Family history, Risk factor, medicine.disease, business
Published
2021
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11. Correction: Developing a common framework for evaluating the implementation of genomic medicine interventions in clinical care: the IGNITE Network’s Common Measures Working Group

Author

Lori A. Orlando, Nina R. Sperber, Corrine Voils, Marshall Nichols, Rachel A. Myers, R. Ryanne Wu, Tejinder Rakhra-Burris, Kenneth D. Levy, Mia Levy, Toni I. Pollin, Yue Guan, Carol R. Horowitz, Michelle Ramos, Stephen E. Kimmel, Caitrin W. McDonough, Ebony B. Madden, and Laura J. Damschroder

Subjects
Genetics (clinical)
Published
2020
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12. Additional file 2: of An electronic family health history tool to identify and manage patients at increased risk for colorectal cancer: protocol for a randomized controlled trial

Author

Goldstein, Karen, Fisher, Deborah, R. Wu, Orlando, Lori, Coffman, Cynthia, Grubber, Janet, Tejinder Rakhra-Burris, Wang, Virginia, Scheuner, Maren T., Sperber, Nina, Santanu Datta, Nelson, Richard, Strawbridge, Elizabeth, Provenzale, Dawn, Hauser, Elizabeth, and Voils, Corrine

Abstract

SPIRIT 2013 Checklist: Recommended items to address in a clinical trial protocol and related documents*. (DOC 122 kb)

Published
2019
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13. Additional file 1: of An electronic family health history tool to identify and manage patients at increased risk for colorectal cancer: protocol for a randomized controlled trial

Author

Goldstein, Karen, Fisher, Deborah, R. Wu, Orlando, Lori, Coffman, Cynthia, Grubber, Janet, Tejinder Rakhra-Burris, Wang, Virginia, Scheuner, Maren T., Sperber, Nina, Santanu Datta, Nelson, Richard, Strawbridge, Elizabeth, Provenzale, Dawn, Hauser, Elizabeth, and Voils, Corrine

Abstract

World Health Organization trial registration dataset. (DOCX 15 kb)

Published
2019
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14. Additional file 3: of An electronic family health history tool to identify and manage patients at increased risk for colorectal cancer: protocol for a randomized controlled trial

Author

Goldstein, Karen, Fisher, Deborah, R. Wu, Orlando, Lori, Coffman, Cynthia, Grubber, Janet, Tejinder Rakhra-Burris, Wang, Virginia, Scheuner, Maren T., Sperber, Nina, Santanu Datta, Nelson, Richard, Strawbridge, Elizabeth, Provenzale, Dawn, Hauser, Elizabeth, and Voils, Corrine

Abstract

Informed consent language. (DOCX 16 kb)

Published
2019
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15. Perspectives on Genetic and Genomic Technologies in an Academic Medical Center: The Duke Experience

Author

Robert Cook-Deegan, Jason Reeves, Nancy Yang, Geoffrey S. Ginsburg, Mollie A. Minear, Tejinder Rakhra-Burris, Allison Vorderstrasse, Sara H. Katsanis, and Leigh Ann Simmons

Subjects
medicine.medical_specialty, Alternative medicine, Medicine (miscellaneous), lcsh:Medicine, return of research results, clinical implementation, Article, Drug package inserts, knowledge gaps, Clinical Research, medicine, Genetics, Genetic Testing, Family history, pharmacogenetics, business.industry, Human Genome, lcsh:R, physician education, personalized medicine, Health Services, 3. Good health, Test (assessment), Health care delivery, genetic tests, Good Health and Well Being, Family medicine, Personalized medicine, Generic health relevance, business, Healthcare providers, Pharmacogenetics, genomic tests
Abstract

UnlabelledIn this age of personalized medicine, genetic and genomic testing is expected to become instrumental in health care delivery, but little is known about its actual implementation in clinical practice.MethodsWe surveyed Duke faculty and healthcare providers to examine the extent of genetic and genomic testing adoption. We assessed providers' use of genetic and genomic testing options and indications in clinical practice, providers' awareness of pharmacogenetic applications, and providers' opinions on returning research-generated genetic test results to participants. Most clinician respondents currently use family history routinely in their clinical practice, but only 18 percent of clinicians use pharmacogenetics. Only two respondents correctly identified the number of drug package inserts with pharmacogenetic indications. We also found strong support for the return of genetic research results to participants. Our results demonstrate that while Duke healthcare providers are enthusiastic about genomic technologies, use of genomic tools outside of research has been limited. Respondents favor return of research-based genetic results to participants, but clinicians lack knowledge about pharmacogenetic applications. We identified challenges faced by this institution when implementing genetic and genomic testing into patient care that should inform a policy and education agenda to improve provider support and clinician-researcher partnerships.

Published
2015

16. Proceedings of the 8th Annual Conference on the Science of Dissemination and Implementation

Author

Lina Jandorf, Janice Horte, Claire Neely, Christine Hartmann, Jennifer Regan, Lior Turgeman, Laura Wyatt, Avi Aggarwal, Elizabeth Murray, Susan Montgomery, Anne Ray, William Lukesh, Susan Yee, Keng-yen Huang, William L. Miller, Terry Jankowski, Anne E. Sales, Samantha M. Harden, Alexandra B. Morshed, George Valko, Julie Gazmararian, Kristen Schaffner, Marie Paul Nisingizwe, Amy Sadler, Heather Kaplan, Celeste Liebrecht, Jennifer Sharpe Potter, Helen Kales, M. Rashad Massoud, Caity Frail, Christian Rusangwa, Candice Monson, Bernard Le Foll, Gemmae Fix, Justin Presseau, George Sayre, Nicholas A. Rattray, Rebekka Lee, Arne Beck, Vincent Liu, Chris Griffiths, Megan Barker, Thomas Love, Leanne Whiteside-Mansell, Ross Shegog, Susan A. Flocke, Laurie Miller Brotman, Jeffery Pitcock, Moses Mwanza, Kera Mallard, Don McGeary, Rinad S. Beidas, Tara Queen, Thana-Ashley Charles, Toni Pollin, Jennifer Zanowiak, Julie Johnson, Carrie Klabunde, Wendy Lantaff, Martin Guilliford, Sabrina Cheng, Elyse Park, Mary McKay, Patricia Cheung, Marla Gardner, Suellen Hopfer, Julie E Reed, Jamie Park, Sarah M. Nielsen, Andrea Forman, Paul Meissner, Brittany Skiles, Steven B. Zeliadt, Shannon Wiltsey Stirman, Christina D. Economos, Amanda Clark, Rachel Kimerling, Katie Dambrun, Leah Gordon, Wen Wan, Krysttel Stryczek, Shari Bolen, Marc Rosenman, Kimberly K Vesco, Joel Rosenthal, Mona Sarfaty, Lara Gunderson, Hardayal Singh, Ann Donze, Ross A. Hammond, Catherine Michel, Stephanie Taylor, David Au, Rakesh Rao, Chris Shea, Christine Markham, David Smelson, Mary Northridge, K. Joanne Pike, Terra Lucas, Sherri L. Lavela, Mary Wangen, Appathurai Balamurugan, Hope Krebill, Daniel Blonigen, Roman Kislov, Edward J. Miech, Peggy A. Hannon, Myra Fahim, Mary Jo Pugh, Ross C. Brownson, Erika Cottrell, Emmanuela Gakidou, Paul Weiss, Kathryn G. Sapnas, Padra Franks, Shereef Elnahal, Margaret Hargreaves, Candyce Kroenke, Sandra Eldridge, Charles Deutsch, Elizabeth A. Dodson, Mona J. Ritchie, Jennifer Leeman, Barbara Bokhour, Paul Wilson, Christina Seelaus, Gina Kruse, Margaret Handley, Rachelle Chambers, Emily Vall, Norman Giesbrecht, Brian L. Egleston, Ariella R. Korn, Melissa Somma McGivney, Della Thonduparambil, Valerie Caldas, Maggie Wolf, Ashley Stoneburner, David A. Ganz, Patricia Dolan Mullen, Kaelin Rapport, Stephen M. Shortell, Teresa Hudson, John Ferrand, Sarah Ono, Jerome Watts, Allison Rodriguez, Ngoc-Cam Escoffery, Rose McGonigle, Ebony Madden, Donna Shelley, Rachel Sturke, Hillary Peabody, Ned Mossman, Giuseppe Raviola, J. Lucian Davis, Ashley Gray, Antoinette Percy-Laurry, Keith McInnes, Ashley Garcia, Nicole Gesualdo, Benjamin Saunders, Jacqueline J. Fickel, Nilay Shah, Barbara Homoya, Olive Kabajaasi, Amy Kilbourne, Aliya Noormohamed, John Humphreys, Sonya Gabrielian, Jennifer Williamson, Frances K. Barg, Thomas Mackie, Jessica Stoll, Ruben Parra-Cardona, Douglas Einstadter, Neda Laiteerapong, Gary Doolittle, Muin J. Khoury, Nadia Minian, Andrew N Blatt, Sylvia Sax, Edmond Ramly, Arezoo Ebnahmady, Achilles Katamba, Amit Mathur, Celine Hollombe, Christopher Smyser, Brook Watts, Nina Sperber, Sarah Birken, Karina Davidson, Jeffrey Solomon, Rosa Dragonetti, Fern Fitzhenry, Leif Solberg, Megan McCullough, Nina Sayer, Michelle Savage, Ashley Ketterer Gruszkowski, Linda Patrick-Miller, Molly Franke, Nora Mueller, Rachel G. Tabak, Elizabeth Neilson, Tejinder Rakhra-Burris, Laura-Mae Baldwin, Peter Selby, Hal Roberts, F. Sessions Cole, Gerry Melgar, Dianne Ward, Ellie Morris, Jamie Ostroff, Kimberly Hoagwood, Stephanie Mazzucca, Victoria Scott, Katie Halkyard, Jason Egginton, Amy Herschell, Nadia Islam, Danielle McKenna, Erin Lebow-Skelley, Richard J. Wood, Michael F. Murray, Jordan Tompkins, Aleksandra Sasha Milicevic, Lisa R. Hirschhorn, Jo Rycroft-Malone, David W. Lounsbury, Kathleen West, Tanya Olmos, Cassandra Gulden, Shalynn Howard, Stephanie Craig Rushing, Sten Vermund, Margaret M. Farrell, Dominique Fetzer, Linda Fleisher, Lisa Simpson, Michael J. Hall, Lisa M Klesges, Marc S. Williams, Karen Schaepe, Allyson Varley, Wynne E. Norton, Julia Kyle, Rivet Amico, Emily Ahles, Bruce R. Schackman, Erin P. Finley, Kristin Weitzel, Shevin Jacob, Rikki S. Gaber, Pamela Ganschow, Joshua Denny, Victor Montori, JoAnn Kirchner, Lauren Brookman-Frazee, Rhonda BeLue, Zachary Patterson, Jennifer Boggs, Riki Mafune, Sarah J. Shoemaker, Kate Winseck, Joan Smith, Marci Schwartz, Gabriel J. Escobar, Shannon Barrett-Williams, Gary K. C. Chan, Arona Ragins, Beth Ann Petrakis, Liam O’Sulleabhain, David Thornton, Cynthia Vinson, Jacky M. Jennings, Rucha Kavathe, Enrique Torres Hernandez, Elijah Goldberg, Patricia Carreno, Gill Harvey, Nathan Kenya-Mugisha, Brandy Smith, Demietrice Pittman, Enola K. Proctor, Angela Moreland, Kasisomayajula Viswanath, Adam Rose, Jennifer Bacci, Sarah Tubbesing, Kenneth Sherr, Emily Sykes, Shoba Ramanadhan, Nicole A. Stadnick, Amanda Brandt, Abraham Wandersman, Chris Gillespie, R. Chris Sheldrick, Amy Kennedy, Sara Dick, Carolyn M. Clancy, Savio Mwaka, Adithya Cattamanchi, Mahrukh Choudhary, Sruthi Buddai, Mark S Bauer, Generosa Grana, Shamik Trivedi, Gwenda Gorman, Deb Langer, Karissa Fenwick, Darcy A. Freedman, Jason Lind, Cara C. Lewis, Steven Lindley, Deborah O. Erwin, Melissa Peskin, Kristen D. Rosen, Terrence L. Hubert, Michael Ong, Aziz Sheikh, Justeen Hyde, Zachary F. Meisel, Claudina Tami, Greg Zimet, Jennifer Grant, Gerald F. Kominski, Jessica M. Long, Allison Myers, Chris Carpenter, Rachel Ceccarelli, Marla Dearing, Sharon Straus, Stephanie Smith, Michael A. Sanchez, Angela Park, Ellen Jones, Luisa Manfredi, Ravi Shah, Jacquelyn Powers, Cara McCormick, Shusmita Rashid, Victoria Pratt, Miya L. Barnett, Michael Parchman, Elaine Böing, Suzanne Heurtin-Roberts, Anita Patel, Christine Lu, Christi Kay, Jeremy Thomas, Craig Rosen, Gbenga Ogedegbe, Amanda T. Parrish, Diane R Lauver, Lori Orlando, Brian S. Mittman, Hallie Udelson, Rachel Gold, Erica Hamilton, José Salato, Youxu C. Tjader, Benjamin Turk, Giselle Perez, Amber Vaughn, Jeffrey R. Smith, Eric R. Larson, Rohit Ramaswamy, Colleen Payton, Jodie A. Trafton, Elisa M. Torres, Cameo Stanick, Bryan J. Weiner, Beatha Nyirandagijimana, Rachel C. Shelton, Rebecca Lengnick-Hall, Michael W. Kennedy, Madalena Monteban, Megan Roberts, Laurel Leslie, Autumn Harnish, Ann Wu, Janet Carpenter, Alexander Fiks, Carol R. Horowitz, Michael Hecht, Andriy V. Samokhvalov, Amanda Gaston, Olufunmilayo I. Olopade, Elizabeth A. Stuart, Dan Berlowitz, Matthew Weber, Amanda Vogel, Yinfei Kong, Rochelle Hanson, Lee Fleisher, Stephen Gloyd, Jay Carruthers, Melissa Courvoisier, Kim Rainey, Carmel Nichols, Christie M Bartels, Gregory A. Aarons, Kristin Mattie, Jonathan Scaccia, Vilma Martinez-Dominguez, Charlene Gaw, Christina Rybak, Nancy Zoellner, Leighann Kimble, Xinxin Shirley Yao, Kandamurugu Manickam, Caitlin Dorsey, Nathalie Moise, Marguerite Fleming, Meghan Lane-Fall, Michael Leo, Carolyn Audet, Stefanie Ferreri, Laura J. Damschroder, Kate McGraw, Colleen Walsh, Ross Brownson, Lindsey Zimmerman, Teresa M. Damush, Lori Christiansen, Hildegarde Mukasakindi, Mary B. Daly, Itzhak Yanovitzky, Laura Di Taranti, Mary Middendorf, Ashley Scudder, Diane Korngiebel, Kimberly Bess, Sarah Valentine, Erick G. Guerrero, Jennifer N. Hill, Sally K. Holmes, Hector P. Rodriguez, Sarah Greene, Joanna Bulkley, Theodore Levin, Cory Hamata, Michelle Barbaresso, Melanie Barwick, Margie Snyder, Sonja K. Schoenwald, Sara Locatelli, Jeffrey R. Harris, Laurie Zawertailo, Adam H. Buchanan, Erin Staab, Isomi Miake-Lye, Emily Lanier, Eva Woodward, David A. Chambers, Dolly Baliunas, Rachel Gruver, Amanda Elsey, Rahul Bhargava, Amy E. Green, Emmeline Chuang, Larissa Myaskovsky, Gemma Pearce, Megan Smith, Melinda Dye, Emily Rentschler Drobek, Lauren Peccoralo, Louise Dixon, Kassy Alia, Daniel Polsky, NithyaPriya Ramalingam, Byron J. Powell, Taren Swindle, Molly M. Simmons, Derri Shtasel, Brian Hackett, Lloyd Sederer, Michelle Miller-Day, Tasoula Masina, Kathleen M. Mazor, Gilo Thomas, Andrea Nevedal, Kaitlyn Sevarino, Julia E. Moore, Susan Essock, Patricia Kipnis, Gila Neta, Kyle Bigham, Christian Helfrich, Peter Hovmand, Sarah Gimbel, Luana Marques, Rendelle Bolton, Yue Guan, Benjamin Teeter, Angela R. Bradbury, Kristen Hammerback, Susan M. Domchek, Heather Baily, Dana F. Clark, Geoffrey M. Curran, Randall Cebul, Anna S. Lau, Shirley Beresford, Larisa Cavallari, Gonzalo Grandes-Odriozola, Eve-Lynn Nelson, Matthew Cummings, Ashley Spaulding, Bijal Balasubramanian, Brooke Ike, Arwen Bunce, Deborah J. Cohen, Jennifer Torres, Heather Halko, Karen Fullerton, Erin Hennessy, Benjamin Crabtree, Carol VanDeusen Lukas, Shawna Smith, Todd Molfenter, Gareth Parry, Kea Turner, Laura Gibson, Patricia Escobar, Becky Yano, Sobia Khan, Shreshtha Madaan, Teis Kristensen, Stuart Cowburn, Allen L. Gifford, Judith Katzburg, Kate Beadle, Maria E. Fernandez, Hilary Pinnock, Alanna Kulchak Rahm, Robert Lieberthal, Sarah Taber-Thomas, Daniel Eisenberg, Regan Burney, Amy Jones, Andrea Ippolito, Donald R. Miller, Christine Timko, Deborah Delevan, Marlana Kohn, Sara Minsky, Wylie Burke, Ulrica von Thiele Schwarz, Megan E. Branda, Alison Tovar, Corrine Voils, Kristen Matlack, Holly Swan, Vera Yakovchenko, Brian Austin, Benjamin Henwood, Mari-Lynn Drainoni, R. Ryanne Wu, Sandy Kuhlman, Jenita Parekh, Jennifer Myers, Aaron Leppin, Julia Mitchell, Robert J. Monte, Cornelia Jessen, Robert Orazem, Diane Cowper, Mary Hook, Jill Stopfer, and Molly Landau

Subjects
medicine.medical_specialty, education.field_of_study, business.industry, Health Policy, Public health, Population, Public Health, Environmental and Occupational Health, Health services research, Library science, Health Informatics, General Medicine, Population health, Health equity, 3. Good health, 03 medical and health sciences, 0302 clinical medicine, Community health, Health care, medicine, 030212 general & internal medicine, business, education, 030217 neurology & neurosurgery, Health policy
Abstract

A1 Introduction to the 8th Annual Conference on the Science of Dissemination and Implementation: Optimizing Personal and Population Health David Chambers1, Lisa Simpson2 1Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Rockville, MD, 20850, USA; 2AcademyHealth, Washington, DC, 20036, USA For the second year in a row, we are pleased to be able to share the proceedings of the Annual Conference on the Science of Dissemination and Implementation in Health, a large meeting reflecting the expanding and evolving research field that seeks to optimize the use of evidence, interventions, and tools from health research within the myriad of settings where people receive health care, make health-related decisions, and increase knowledge of influences on the health of the population. We once again benefitted from a strong partnership, co-led by AcademyHealth and the National Institutes of Health (NIH), with co-sponsorship from the Agency for Healthcare Research and Quality (AHRQ), the Patient Centered Outcomes Research Institute (PCORI), the Robert Wood Johnson Foundation (RWJF), the US Department of Veterans Affairs (VA), and the WT Grant Foundation. In addition, we benefitted from the collaboration of staff from the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO). NIH and AcademyHealth again co-led the program planning committee, which focused on the development of the plenary sessions, and convened a scientific advisory panel to suggest speakers and advise on the overall conference development. The planning committee identified four key areas around which to focus the plenary panels and keynote address. Dr. America Bracho, M.D., M.P.H., Executive Director of Latino Health Access in Orange County, California, spoke about the opportunities for implementation science to inform efforts to improve community health and engage underserved populations. The three plenary panels each focused on a significant future direction for dissemination and implementation (D & I) research: the interface between D&I science and population health, emerging opportunities for global implementation science, and the challenges around implementation of precision medicine. The plenary sessions were complemented by facilitated lunchtime discussions on the same three topics, which offered participants an opportunity to identify key research questions for each and brainstorm next steps. Synopses of the lunchtime discussions are included in this supplement. Given the overwhelming success of the 2014 conference and the large number of abstracts received in 2014 (660), the program planning committee identified eight program tracks for abstract submitters to respond to, and through which the concurrent sessions of the conference would be organized. These tracks—Behavioral Health, Big Data and Technology for Dissemination and Implementation Research, Clinical Care Settings, Global Dissemination and Implementation, Promoting Health Equity and Eliminating Disparities, Health Policy Dissemination and Implementation, Prevention and Public Health, and Models, Measures and Methods— were designed to enable conference participants to follow a consistent theme across the multiple sessions of the conference and form the structure of this supplement. The call for abstracts, including individual paper presentations, individual posters and panel presentations, resulted in 515 submissions, spread across the eight thematic tracks. Over one hundred reviewers devoted their time to ensuring a comprehensive and expert review, and reviews were conducted within each track and coordinated by the track leads. For the final program, 64 oral presentations, 12 panels, and 263 posters were presented over the two-day meeting. Slides for the oral presentations and panels (with the agreement of the authors) were posted on the conference website (http://diconference.academyhealth.org/archives/2015archives) and all abstracts were included on the conference webapp (https://academyhealth.confex.com/academyhealth/2015di/meetingapp.cgi). This supplement has compiled the abstracts for presented papers, panel sessions, and lunchtime discussions from the 8th Annual Meeting on the Science of Dissemination and Implementation in Health: Optimizing Personal and Population Health. We are pleased to have the abstracts from the conference together in one volume once again, and look forward to the 9th Annual meeting, scheduled for December in Washington, D.C.

Published
2016
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17. Perceptions of Personalized Medicine in an Academic Health System: Educational Findings

Author

Mollie A. Minear, Jason Reeves, Geoffrey S. Ginsburg, Tejinder Rakhra-Burris, Nancy Yang, Sara H. Katsanis, Leigh Ann Simmons, Robert Cook-Deegan, and Allison Vorderstrasse

Subjects
medicine.medical_specialty, Medical education, Descriptive statistics, business.industry, media_common.quotation_subject, MEDLINE, Precision medicine, Article, Family medicine, Perception, Health care, Medicine, Personalized medicine, business, Public education, media_common, Patient education
Abstract

Objective: Prior reports demonstrate that personalized medicine implementation in clinical care is lacking. Given the program focus at Duke University on personalized medicine, we assessed health care providers’ perspectives on their preparation and educational needs to effectively integrate personalized medicine tools and applications into their clinical practices. Methods: Data from 78 health care providers who participated in a larger study of personalized and precision medicine at Duke University were analyzed using Qualtrics (descriptive statistics). Individuals age 18 years and older were recruited for the larger study through broad email contacts across the university and health system. All participants completed an online 35-question survey that was developed, pilot-tested, and administered by a team of interdisciplinary researchers and clinicians at the Center for Applied Genomics and Precision Medicine. Results: Overall, providers reported being ill-equipped to implement personalized medicine in clinical practice. Many respondents identified educational resources as critical for strengthening personalized medicine implementation in both research and clinical practice. Responses did not differ significantly between specialists and primary providers or by years since completion of the medical degree. Conclusions: Survey findings support prior calls for provider and patient education in personalized medicine. Respondents identified focus areas in training, education, and research for improving personalized medicine uptake. Given respondents’ emphasis on educational needs, now may be an ideal time to address these needs in clinical training and public education programs.

Published
2015

18. Institutional profile. UNC Institute for Pharmacogenomics and Individualized Therapy: interdisciplinary research for individual care

Author

Karen E. Weck, James P. Evans, Kevin M. Long, Richard M. Goldberg, William J. Irvin, John M. Valgus, Christine M. Walko, John A. Vernon, Mary W Roederer, Janelle M. Hoskins, Tim Wiltshire, Michael J. Wagner, William C. Zamboni, Lynn G. Dressler, Alison A. Motsinger-Reif, Tejinder Rakhra-Burris, Kristy L. Richards, Daniel E Jonas, Tammy M. Havener, Patricia A. Deverka, Marcia Van Riper, Howard L. McLeod, and J. Todd Auman

Subjects
Biomedical Research, Clinical cohort, Genotype, Breast Neoplasms, Medical care, Multidisciplinary approach, Genetics, Global health, North Carolina, Humans, Precision Medicine, RNA, Small Interfering, Molecular Biology, Randomized Controlled Trials as Topic, Pharmacology, Medical education, Academies and Institutes, Therapeutic evaluation, Intervention studies, Tamoxifen, Drug activity, Pharmacogenetics, Pharmacogenomics, Molecular Medicine, Female, Warfarin, Psychology
Abstract

The Institute for Pharmacogenomics and Individualized Therapy (IPIT) at the University of North Carolina at Chapel Hill (NC, USA) is a collaborative, multidisciplinary unit that brings together faculty from different disciplines and crosses the traditional departmental/school structure to perform pharmacogenomics research. IPIT investigators work together towards the goal of developing therapies to enable the delivery of individualized medical care. The NIH-supported Comprehensive Research on Expressed Alleles in Therapeutic Evaluation (CREATE) group leads the field in the evaluation of pathways regulating drug activity, and also provides a foundation for future IPIT research. IPIT members perform bench research, clinical cohort analysis and prospective clinical intervention studies, research on the integration of pharmacogenomic therapy into practice and research to foster global health pharmacogenomics application through the Pharmacogenetics for Every Nation Initiative. IPIT Investigators are actively incorporating a pharmacogenomics curriculum into existing teaching programs at all levels.

Published
2009

19. Genomics and public health practice: a survey of nurses in local health departments in North Carolina

Author

Elizabeth Mahanna, Mary V. Davis, Sara Duckworth, H. Pennington Whiteside, Rachel Stevens, Robert C. Millikan, Tejinder Rakhra-Burris, Debra E. Irwin, and Myra I. Roche

Subjects
medicine.medical_specialty, Ethnic group, Nursing, North Carolina, Medicine, Humans, Genetic Predisposition to Disease, Family history, Medical History Taking, Cervical cancer, Response rate (survey), Family Health, business.industry, Health Policy, Public health, Public Health, Environmental and Occupational Health, Patient contact, Public health nurse, Genomics, medicine.disease, United States, Family medicine, Public Health Nursing, Practice Guidelines as Topic, Training needs, Centers for Disease Control and Prevention, U.S, business, Needs Assessment
Abstract

In order to examine the extent to which current public health practices incorporate information about genetic susceptibilities potentially obtained by a comprehensive family history, public health nurses in North Carolina were surveyed to assess the extent to which this information is routinely collected. In addition, we measured nurses' awareness of the Centers for Disease Control and Prevention's Genomic Competencies and assessed training needs related to genomics. A self-administered survey was distributed to all public health nurse supervisors, directors, consultants as well as Breast and Cervical Cancer Coordination Program managers in North Carolina. A 68.4% response rate (292/427) was obtained. The majority (88.7%) of nurses with regular patient contact report routine gathering of family history data for adult chronic diseases. Some key family history data components are routinely collected including the total number of affected relatives (76%), ethnicity information (57.5%), and age of chronic disease onset (31.8%). A minority of nurses (9%) reported awareness of the Genomic Competencies, and most (72.1%) acknowledged their need for training in order to achieve these competencies. Information collected by taking a family history can indicate a combination of genetic and environmental susceptibilities for chronic diseases.

Published
2005

20. Gene testing: what the health professional needs to know

Author

Tejinder Rakhra-Burris, Temitope O. Keku, and Robert C. Millikan

Subjects
medicine.medical_specialty, Process (engineering), Genetic counseling, Health Personnel, DNA Mutational Analysis, Medicine (miscellaneous), Disease, Polymerase Chain Reaction, Databases, Genetic, Genetic predisposition, Medicine, Humans, Genetic Testing, Predictive testing, Gene, Genetic testing, Nutrition and Dietetics, medicine.diagnostic_test, business.industry, Genetic disorder, Chromosome Mapping, DNA Methylation, medicine.disease, Biotechnology, Family medicine, business, Microsatellite Repeats
Abstract

Physicians and health professionals are faced with new challenges in the era of increasing information on genetics and health. The sequencing of the human genome has created more opportunities for genetic research and increased awareness of the role of genes in diseases. There is also an increased awareness of genetic susceptibility and gene testing. As a result of the advances in genetic research, the public demand for gene testing is on the rise. Patients are now seeking more information about inheritable diseases and predisposition to genetically related disease from doctors and other health professionals. Genetic tests are often conducted to confirm the diagnosis of a genetic disease as well as to assess genetic risk, predict response to drugs, and assist in reproductive decision making. Genetic tests are available for over 950 inherited diseases or conditions in the GeneTests data base for clinical or research purposes. A number of challenges face health professionals when using genetic tests for diagnosis, predictive testing, or reproductive decision making. These include the constant change in genetics knowledge and the increased demand to keep up with the various aspects of the genetic testing process. To meet these demands, physicians and other health professionals should use available educational genetic resources to provide adequate patient care.

Published
2003

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