Consumer input into research: The Australian Cancer Trials website

Health Research Policy and Systems

Volumn 9, Issue , 2011, Pages

  Dear, Rachel F ^a   Barratt, Alexandra L ^b   Crossing, Sally ^c   Butow, Phyllis N ^d   Hanson, Susan ^e   Tattersall, Martin H N ^d  

^a UNIVERSITY OF SYDNEY   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c Breast Cancer Action Group NSW   (Australia)

^d UNIVERSITY OF SYDNEY   (Australia)

^e Cancer Trials Australia   (Australia)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; AUSTRALIA; AUSTRALIAN CANCER TRIALS WEBSITE; CANCER RESEARCH; CLINICAL TRIAL (TOPIC); CONSUMER; DOCTOR PATIENT RELATION; FEMALE; HUMAN; MAJOR CLINICAL STUDY; MALE; PATIENT ASSESSMENT; QUESTIONNAIRE; SEARCH ENGINE; WEB BROWSER;

EID: 79959434606     PISSN: None     EISSN: 14784505     Source Type: Journal    
DOI: 10.1186/1478-4505-9-30     Document Type: Article

References (52)

1. Australian Institute of Health and Welfare. , http://www.aihw.gov.au/cancer
2. Senate Community Affairs Committee The cancer journey: informing choice, in Report of the Inquiry into services and treatment options for persons with cancer. 2005, 1-169. Australian Government; Canberra, Senate Community Affairs Committee.
3. National Health Priority Action Council (NHPAC) National Service Improvement Framework for Cancer. 2006, 1-92. Australian Government; Canberra, National Health Priority Action Council (NHPAC).
4. 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, 165(19):2272-2277. 10.1001/archinte.165.19.2272, 1343501, 16246994.
5. Abraham NS, Young JM, Solomon MJ. A systematic review of reasons for nonentry of eligible patients into surgical randomized controlled trials. Surgery 2006, 139(4):469-483. 10.1016/j.surg.2005.08.014, 16627056.
6. Fallowfield LJ, Jenkins V, Brennan C, Sawtell M, Moynihan C, Souhami RL. Attitudes of patients to randomised clinical trials of cancer therapy. Eur J Cancer 1998, 34(10):1554-1559. 10.1016/S0959-8049(98)00193-2, 9893627.
7. Solomon M, McLeod R. Surgery and the randomised controlled trial: past, present and future. Med J Aust 1998, 169:380-383.
8. Mills EJ, Seely D, Rachlis B, Griffith L, Wu P, Wilson K, Ellis P, Wright JR. Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. The Lancet Oncology 2006, 7(2):141-148. 10.1016/S1470-2045(06)70576-9, 16455478.
9. Mc Daid C, Hodges Z, Fayter D, Stirk L, Eastwood A. Increasing participation of cancer patients in randomised controlled trials: A systematic review. Trials 2006, 7.
10. Butow P, Devine R, Boyer M, Pendlebury S, Jackson M, Tattersall MH. Cancer consultation preparation package: changing patients but not physicians is not enough. J Clin Oncol 2004, 22(21):4401-4409. 10.1200/JCO.2004.66.155, 15514382.
11. Health Information National Trends Survey. , http://hints.cancer.gov/questions/section1.jsp?section=Internet+Use
12. Castleton K, Fong T, Wang-Gillam A, Waqar MA, Jeffe DB, Kehlenbrink L, Gao F, Govindan R. A survey of Internet utilization among patients with cancer. Support Care Cancer 2010,
13. Improving the usability of the CancerHelp website. , http://www.minervation.com/index.aspx?o=1149&newsitem=2106
14. Grama LM, Beckwith M, Bittinger W, Blais D, Lollar C, Middleswarth A, Noone M, Price D, Quint-Kasner S, Shields V. The role of user input in shaping online information from the National Cancer Institute. J Med Internet Res 2005, 7(3):e25. 10.2196/jmir.7.3.e25, 1550662, 15998616.
15. Allison M. Can web 2.0 reboot clinical trials?. Nat Biotechnol 2009, 27(10):895-902. 10.1038/nbt1009-895, 19816442.
16. Atkinson NL, Massett HA, Mylks C, Hanna B, Deering MJ, Hesse BW. User-centered research on breast cancer patient needs and preferences of an Internet-based clinical trial matching system. J Med Internet Res 2007, 9(2):e13. 10.2196/jmir.9.2.e13, 1874719, 17513284.
17. Metz JM, Coyle C, Hudson C, Hampshire M. An Internet-based cancer clinical trials matching resource. J Med Internet Res 2005, 7(3):e24. 10.2196/jmir.7.3.e24, 1550658, 15998615.
18. Wallwiener M, Wallwiener CW, Brucker SY, Hartkopf AD, Fehm TN, Kansy JK. The Brustkrebs-Studien.de website for breast cancer patients: User acceptance of a German internet portal offering information on the disease and treatment options, and a clinical trials matching service. BMC Cancer 10:663.
19. Simon C, Schramm S, Hillis S. Patient internet use surrounding cancer clinical trials: clinician perceptions and responses. Contemp Clin Trials 2010, 31(3):229-234. 10.1016/j.cct.2010.03.003, 2858243, 20227523.
20. Rodrigues MJ, Haberer S, Dionysopoulos D, Barriere J, Wassermann J, Tazi Y, Rajpar S, Giroux J, Bidard FC, Loriot Y. Internet to boost patient accrual in oncology trials? A multiinstitutional AERIO study. Ann Oncol 2011, 22(2):490-491. 10.1093/annonc/mdq746, 21248065.
21. Carden CP, Jefford M, Rosenthal MA. Information about cancer clinical trials: an analysis of Internet resources. Eur J Cancer 2007, 43(10):1574-1580. 10.1016/j.ejca.2007.04.016, 17544266.
22. Simon C, Hegedus S. Exploring websites on cancer clinical trials: an empirical review. Contemp Clin Trials 2005, 26(5):530-533. 10.1016/j.cct.2005.07.004, 16122989.
23. National Health and Medical Research Council and Consumers' Health Forum of Australia A Model Framework for Consumer and Community Participation in Health and Medical Research. 2005, Australian Government; Canberra, National Health and Medical Research Council and Consumers' Health Forum of Australia.
24. Oliver S, Clarke-Jones L, Rees R, Milne R, Buchanan P, Gabbay J, Gyte G, Oakley A, Stein K. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess 2004, 8(15).
25. Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. Int J Health Care Qual Assur Inc Leadersh Health Serv 2005, 18(2-3):103-112.
26. National Cancer Plan: a Plan for Investment, a Plan for Reform. 2000, Department of Health; London, United Kingdom.
27. Tallon D. Consumer involvement in research is essential. BMJ 2000, 320:380. 10.1136/bmj.320.7231.380, 10712030.
28. Bolchini D, Paolini P. Interactive dialogue model: a design technique for multichannel applications. Multimedia, IEEE Transactions on 2006, 8(3):529-541.
29. Kreuter MW, Oswald DL, Bull FC, Clark EM. Are tailored health education materials always more effective than non-tailored materials?. Health Educ Res 2000, 15(3):305-315. 10.1093/her/15.3.305, 10977378.
30. Australian Cancer Trials. , http://www.australiancancertrials.gov.au/
31. Cancer Voices NSW. , http://www.cancervoices.org.au
32. Saunders C, Crossing S, Girgis A, Butow P, Penman A. Operationalising a model framework for consumer and community participation in health and medical research. Aust New Zealand Health Policy 2007, 4:13. 10.1186/1743-8462-4-13, 1913530, 17592651.
33. Saunders C, Girgis A, Butow P, Crossing S, Penman A. From inclusion to independence - training consumers to review research. Health Research Policy and Systems 2008,
34. Annual Report in Cancer Australia Annual Report 2007-2008. 2008, Australian Government; Canberra.
35. Saunders C, Girgis A, Butow P, Crossing S, Penman A. Beyond scientific rigour: funding cancer research of public value. Health Policy 2007, 84(2-3):234-242. 10.1016/j.healthpol.2007.05.002, 17573144.
36. CancerHelp UK. , http://www.cancerhelp.org.uk/
37. National Cancer Institute. , http://www.cancer.gov/clinicaltrials
38. Google Analytics. , http://www.google.com/analytics/
39. Health Insite. , http://www.healthinsite.gov.au/
40. Brown RF, Butow PN, Dunn SM, Tattersall MH. Promoting patient participation and shortening cancer consultations: a randomised trial. Br J Cancer 2001, 85(9):1273-1279. 10.1054/bjoc.2001.2073, 2375236, 11720460.
41. UK Clinical Trials Gateway. , http://www.ukctg.nihr.ac.uk/default.aspx
42. International Standard Randomised Controlled Number Register. , http://www.isrctn.org/
43. Brown RFSE, Leighl N, Butow PN, Ostroff J, Edgerson S, Tattersall MHN. Enhancing decision making about participation in cancer clinical trials: Development of a Question Prompt List. Journal of Supportive Care in Cancer 2010,
44. Monaco V, Krills SK, Monaco V, Krills SK. On-line information about cancer clinical trials: evaluating the Web sites of comprehensive cancer centers. AMIA Annual Symposium Proceedings/AMIA Symposium 2003, 470-474.
45. Turning into digital goldfish. , http://news.bbc.co.uk/2/hi/science/nature/1834682.stm
46. Zarin DA, Tse T, Williams RJ, Califf RM, Ide NC. The ClinicalTrials.gov Results Database Update and Key Issues. N Engl J Med 364(9):852-860.
47. Goodare H, Lockwood S. Involving patients in clinical research. BMJ 1999, 319(7212):724-725. 1116584, 10487984.
48. United States Department of Defense Congressionally Directed Medical Research Programs (CDMRP). , http://cdmrp.army.mil
49. Alzheimer's Society. , http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200296
50. Cancer Council NSW. , http://www.cancercouncil.com.au/editorial.asp?pageid=2229
51. O'Donnell M, Entwistle V. Consumer involvement in research projects: the activities of research funders. Health Policy 2004, 69(2):229-238. 10.1016/j.healthpol.2003.12.011, 15212869.
52. National Health and Medical Research Council and Consumers' Health Forum Statement on Consumer and Community Participation in Health and Medical Research (the Statement on Participation). 2002, Australian Government; Canberra, National Health and Medical Research Council and Consumers' Health Forum.