User-centered research on breast cancer patient needs and preferences of an internet-based clinical trial matching system

Journal of Medical Internet Research

Volumn 9, Issue 2, 2007, Pages

  Atkinson, Nancy L ^a   Massett, Holly A ^b   Mylks, Christy ^b   Hanna, Bethany ^c   Deering, Mary Jo ^b   Hesse, Bradford W ^b  

^a UNIVERSITY OF MARYLAND   (United States)

^b NATIONAL CANCER INSTITUTE   (United States)

^c School Nutrition Association   (United States)

Author keywords

Breast neoplasms; Human computer interaction; Personal health records; Qualitative research; Software design; User centered design; User computer interface

Indexed keywords

ADULT; ARTICLE; BREAST CANCER; CANCER PATIENT; CANCER RESEARCH; CLINICAL ARTICLE; CLINICAL PROTOCOL; COMPUTER PROGRAM; CONTROLLED STUDY; FEMALE; HEALTH CARE NEED; HEALTH CARE SYSTEM; HUMAN; HUMAN COMPUTER INTERACTION; INTERNET; MEDICAL DECISION MAKING; MEDICAL INFORMATION SYSTEM; ONLINE SYSTEM; PATIENT ATTITUDE; AGED; BREAST TUMOR; CLINICAL TRIAL; COMPUTER INTERFACE; DECISION MAKING; INTERVIEW; MEDICAL RECORD; MIDDLE AGED; PATIENT SELECTION; QUALITATIVE RESEARCH;

ADULT; AGED; BREAST NEOPLASMS; CLINICAL TRIALS; DECISION MAKING; FEMALE; HUMANS; INTERNET; INTERVIEWS; MEDICAL RECORDS; MIDDLE AGED; PATIENT SELECTION; QUALITATIVE RESEARCH; USER-COMPUTER INTERFACE;

EID: 34249939003     PISSN: None     EISSN: 14388871     Source Type: Journal    
DOI: 10.2196/jmir.9.2.e13     Document Type: Article

References (24)

1. Sung NS, Crowley WF, Genel M, Salber P, Sandy L, Sherwood LM, et al. Central challenges facing the national clinical research enterprise. JAMA 2003 Mar 12;289(10):1278-1287.
2. Marks L, Power E. Using technology to address recruitment issues in the clinical trial process. Trends Biotechnol 2002;20:105-109.
3. Metz JM, Coyle C, Hudson C, Hampshire M. An Internet-based cancer clinical trials matching resource. J Med Internet Res 2005;7(3):e24
4. Fox S, Rainie L. Vital Decisions: How Internet Users Decide What Information to Trust When They or Their Loved Ones Are Sick. Washington, DC: Pew Internet & American Life Project; 2002. URL: http://www.pewinternet.org/ pdfs/PIP_Vital_Decisions_May2002.pdf
5. National Telecommunications and Information Administration. A Nation Online: Entering the Broadband Age. Washington, DC: US Department of Commerce; 2004. URL: http://www.ntia.doc.gov/reports/anol/NationOnlineBroadband04.pdf
6. Markle Foundation. Achieving Electronic Connectivity in Healthcare: A Preliminary Roadmap from the Nation's Public and Private-Sector Healthcare Leaders. New York: Markle Foundation; 2004. URL: http://www.connectingforhealth. org/resources/cfh_aech_roadmap_072004.pdf
7. Nathan DG, Wilson JD. Clinical research and the NIH - a report card. N Engl J Med 2003 Nov 6;349(19):1860-1865.
8. Lovato LC, Hill K, Hertert S, Hunninghake DB, Probstfield JL. Recruitment for controlled clinical trials: literature summary and annotated bibliography. Control Clin Trials 1997;18:328-352.
9. Ross S, Grant A, Counsell C, Gillespie W, Russell I, Prescott R. Barriers to participation in randomised controlled trials: a systematic review. J Clin Epidemiol 1999 Dec;52(12):1143-1156.
10. Grunfeld E, Zitzelsberger L, Coristine M, Aspelund F. Barriers and facilitators to enrollment in cancer clinical trials: Qualitative study of the perspectives of clinical research associates. Cancer 2002;95(7):1577-1583.
11. Mills EJ, Seely D, Rachlis B, Griffith L, Wu P, Wilson K, et al. Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. Lancet Oncol 2006 Feb;7(2):141-148.
12. Lara PN, Higdon R, Lim N, Kwan K, Tanaka M, Lau DH, et al. Prospective evaluation of cancer clinical trial accrual patterns: identifying potential barriers to enrollment. J Clin Oncol 2001 Mar 15;19(6):1728-1733
13. Adams-Campbell LL, Ahaghotu C, Gaskins M, Dawkins FW, Smoot D, Polk OD, et al. Enrollment of African Americans into clinical treatment trials: Study design barriers. J Clin Oncol 2004;22:730-734
14. Markle Foundation. Connecting Americans to their Healthcare. Final Report: Working Group on Policies for Electronic Information Sharing between Doctors and Patients. New York: Markle Foundation; 2004. URL: http://www.connectingforhealth.org/resources/wg_eis_final_report_0704.pdf
15. Ross SE, Todd J, Moore LA, Beaty BL, Wittevrongel L, Lin C. Expectations of patients and physicians regarding patient-accessible medical records. J Med Internet Res 2005;7(2):e13
16. Breitfeld PP, Ullrich F, Anderson J, Crist WM. Web-based decision support for clinical trial eligibility determination in an international clinical trials network. Control Clin Trials 2003 Dec;24(6):702-710.
17. Embi PJ, Jain A, Clark J, Bizjack S, Hornung R, Harris CM. Effect of a clinical trial alert system on physician participation in trial recruitment. Arch Intern Med 2005 Oct 24;165(19):2272-2277
18. Simon C, Hegedus S. Exploring websites on cancer clinical trials: an empirical review. Contemp Clin Trials 2005;26(5):530-533.
19. Monaco V, Krills SK. On-line information about cancer clinical trials: evaluating the Web sites of comprehensive cancer centers. AMIA Annu Symp Proc 2003:470-474.
20. US Department of Health and Human Services. Research-Based Web Design & Usability Guidelines. Washington, DC: US Department of Health and Human Services; 2006. URL: http://usability.gov/pdfs/guidelines_book.pdf
21. Redish J, Chisnell D. Designing Websites for Older Adults: A Recent Review of the Literature. Washington, DC: American Association of Retired Persons; 2004. URL: http://assets.aarp.org/www.aarp.org_/articles/research/oww/ AARPLitReview2004.pdf
22. Greenbaum TL. The Handbook for Focus Group Research. 2nd edition. Thousand Oaks, CA: Sage; 1998. URL: http://www.sagepub.co.uk/refbooksProdDesc. nav?prodId=Book6819
23. Morgan DL. Successful Focus Groups: Advancing the State of the Art. Newbury Park, CA: Sage; 1993. URL: http://www.sagepub.co.uk/booksProdDesc.nav? prodId=Book3927
24. Brawley O. The study of accrual to clinical trials: Can we learn from studying who enters our studies? J Clin Oncol 2004;22(11):2039-2040