A rural community's involvement in the design and usability testing of a computer-based informed consent process for the personalized medicine research project

American Journal of Medical Genetics, Part A

Volumn 164, Issue 1, 2014, Pages 129-140

  Mahnke, Andrea N ^a   Plasek, Joseph M ^a,b   Hoffman, David G ^a   Partridge, Nathan S ^a   Foth, Wendy S ^a   Waudby, Carol J ^a   Rasmussen, Luke V ^a   Mcmanus, Valerie D ^a   Mccarty, Catherine A ^a,c  

^a MARSHFIELD CLINIC   (United States)

^b UNIVERSITY OF MINNESOTA   (United States)

^c ESSENTIA INSTITUTE OF RURAL HEALTH   (United States)

Author keywords

Computer based informed consent; Decision making; Focus groups; Genetic research; Usability

Indexed keywords

ART; ARTICLE; COMPENSATION; COMPUTER AIDED DESIGN; HUMAN; INFORMED CONSENT; MUSIC; PATIENT DECISION MAKING; PERSONALIZED MEDICINE; PRINTING; PRIORITY JOURNAL; QUESTIONNAIRE; READING; REINFORCEMENT; REWARD; RURAL POPULATION; SIMULATION; VIDEORECORDING; AGED; COMPREHENSION; COMPUTER INTERFACE; FEMALE; INFORMATION PROCESSING; MALE; MIDDLE AGED; RESEARCH SUBJECT;

AGED; COMPREHENSION; CONSENT FORMS; FEMALE; FOCUS GROUPS; HUMANS; INFORMED CONSENT; MALE; MIDDLE AGED; PRECISION MEDICINE; RESEARCH SUBJECTS; SURVEYS AND QUESTIONNAIRES; USER-COMPUTER INTERFACE;

EID: 84890790058     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.36220     Document Type: Article

References (19)

1. Beskow LM, Friedman JY, Hardy NC, Lin L, Weinfurt KP. 2010. Developing a simplified consent form for biobanking. PLoS ONE 5:e13302.
2. Bickmore TW, Pfeifer LM, Paasche-Orlow MK. 2009. Using computer agents to explain medical documents to patients with low health literacy. Patient Educ Couns 75:315-320.
3. Brooke J. 1996. SUS: A "quick and dirty" usability scale. In: Jordan PW, Thomas B, Weerdmeester BA, McClell IL, editors. Usability evaluation in industry. London, UK: Taylor & Francis. pp 189-194.
4. Campbell FA, Goldman BD, Boccia ML, Skinner M. 2004. The effect of format modifications and reading comprehension on recall of informed consent information by low-income parents: A comparison of print, video, and computer-based presentations. Patient Educ Couns 53:205-216.
5. Frazier L, Calvin AO, Mudd GT, Cohen MZ. 2006. Understanding of genetics among older adults. J Nurs Scholarsh 38:126-132.
6. Issa MM, Setzer E, Charaf C, Webb AL, Derico R, Kimberl IJ, Fink AS. 2006. Informed versus uninformed consent for prostate surgery: The value of electronic consents. J Urol 176:694-699.
7. Jefford M, Moore R. 2008. Improvement of informed consent and the quality of consent documents. Lancet Oncol 9:485-493.
8. Jimison HB, Sher PP, Appleyard R, LeVernois Y. 1998. The use of multimedia in the informed consent process. J Am Med Inform Assoc 5:245-256.
9. Kahn MJ, Prail A. 1994. Formal usability inspections. In: Nielsen J, Mack RL, editors. Usability inspection methods. New York: John Wiley & Sons, Inc. pp 141-171.
10. Marsh VM, Kamuya DM, Mlamba AM, Williams TN, Molyneux SS. 2010. Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya. BMC Med Ethics 11:13.
11. McCarty CA, Wilke RA, Giampietro PF, Wesbrook SD, Caldwell MD. 2005. Marshfield Clinic Personalized Medicine Research Project (PMRP): Design, methods and recruitment for a large population-based biobank. Pers Med 2:49-79.
12. McCarty C, Nair A, Austin DM, Giampietro PF. 2007. Informed consent and subject motivation to participate in a large, population-based genomics study; the Marshfield Clinic Personalized Medicine Research Project. Commun Genet 10:2-29.
13. McCarty CA, Chapman-Stone D, Derfus T, Giampietro PF, Fost N, Marshfield Clinic PMRP Community Advisory Group. 2008a. Community consultation and communication for a population-based DNA biobank: The Marshfield clinic personalized medicine research project. Am J Med Genet Part A 146A:3026-3033.
14. McCarty CA, Peissig P, Caldwell MD, Wilke RA. 2008b. The Marshfield Clinic Personalized Medicine Research Project (PMRP): 2008 scientific update and lessons learned in the first 6 years. Pers Med 5:529-541.
15. McCarty C, Chisholm R, Chute C, Kullo I, Jarvik G, Larson E, Li R, Masys D, Ritchie M, Roden D, Struewing JP, Wolf WA, eMERGE Team. 2011. The eMERGE Network: A consortium of biorepositories linked to electronic medical records data for conducting genomic studies. BMC Med Genomics 4:13.
16. Molyneux CS, Wassenaar DR, Peshu N, Marsh K. 2005. 'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': Community voices on the notion and practice of informed consent for biomedical research in developing countries. Soc Sci Med 61:443-454.
17. Plasek JM, Pieczkiewicz DS, Mahnke AN, McCarty CA, Starren JB, Westra BL. 2011. The role of nonverbal and verbal communication in a multimedia informed consent process. Appl Clin Inform 2:240-249.
18. The Flesch Grade Level Readability Formula. 2012. Available at: http://www.readabilityformulas.com/flesch-grade-level-readability-formula.php. Accessed February 3, 2012.
19. Tullis T, Albert B. 2008. Self-reported metrics. In: Fleisner M, editor. Measuring the user experience collecting, analyzing, and presenting usability metrics. Amsterdam, The Netherlands: Elsevier/Morgan Kaufmann. pp 123-166.