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BMC Cancer

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Open Access 01-12-2010 | Research article

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

Authors: Markus Wallwiener, Christian W Wallwiener, Sara Y Brucker, Andreas D Hartkopf, Tanja N Fehm, Julia K Kansy

Published in: BMC Cancer | Issue 1/2010

Abstract

Background

The internet portal http://www.brustkrebs-studien.de (BKS) was launched in 2000 by the German Society of Senology (DGS) and the Baden-Württemberg Institute for Women's Health (IFG) to provide expert-written information on breast cancer online and to encourage and facilitate the participation of breast cancer patients in clinical trials. We describe the development of BKS and its applications, and report on website statistics and user acceptance.

Methods

Existing registries, including ClinicalTrials.gov, were analysed before we designed BKS, which combines a trial registry, a knowledge portal, and an online second opinion service. An advisory board guided the process. Log files and patient enquiries for trial participation and second opinions were analysed. A two-week user satisfaction survey was conducted online.

Results

During 10/2005-06/2010, the portal attracted 702,655 visitors, generating 15,507,454 page views. By 06/2010, the website's active scientific community consisted of 189 investigators and physicians, and the registry covered 163 clinical trial protocols. In 2009, 143 patients requested trial enrolment and 119 sought second opinions or individual treatment advice from the expert panel. During the two-week survey in 2008, 5,702 BKS visitors submitted 507 evaluable questionnaires. Portal acceptance was high. Respondents trusted information correctness (80%), welcomed self-matching to clinical trials (79%) and planned to use the portal in the future (76%) and recommend it to others (81%).

Conclusions

BKS is an established and trusted breast cancer information platform offering up-to-date resources and protocols to the growing physician and patient community to encourage participation in clinical trials. Further studies are needed to assess potential increases in trial enrolment by eligibility matching services.

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Balducci L: Management of cancer in the elderly. Oncology (Williston Park). 2006, 20 (2): 135-143. discussion 144, 146, 151-132

Brucker SY, Schumacher C, Sohn C, Rezai M, Bamberg M, Wallwiener D, Committee S: Benchmarking the quality of breast cancer care in a nationwide voluntary system: the first five-year results (2003-2007) from Germany as a proof of concept. BMC Cancer. 2008, 8 (1): 358-10.1186/1471-2407-8-358.CrossRefPubMedPubMedCentral

Castel P, Negrier S, Boissel JP: Why don't cancer patients enter clinical trials? A review. Eur J Cancer. 2006, 42 (12): 1744-1748. 10.1016/j.ejca.2005.10.033.CrossRefPubMed

Wei SJ, Metz JM, Coyle C, Hampshire M, Jones HA, Markowitz S, Rustgi AK: Recruitment of patients into an internet-based clinical trials database: the experience of OncoLink and the National Colorectal Cancer Research Alliance. J Clin Oncol. 2004, 22 (23): 4730-4736. 10.1200/JCO.2004.07.103.CrossRefPubMed

Comis RL, Miller JD, Aldige CR, Krebs L, Stoval E: Public attitudes toward participation in cancer clinical trials. J Clin Oncol. 2003, 21 (5): 830-835. 10.1200/JCO.2003.02.105.CrossRefPubMed

Cox K, McGarry J: Why patients don't take part in cancer clinical trials: an overview of the literature. Eur J Cancer Care (Engl). 2003, 12 (2): 114-122. 10.1046/j.1365-2354.2003.00396.x.CrossRef

Sawka CA, Pritchard KI: Can improved communication increase patient participation in randomised clinical trials?. Eur J Cancer. 2001, 37 (3): 297-299. 10.1016/S0959-8049(00)00434-2.CrossRefPubMed

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. 10.1002/cncr.10862.CrossRefPubMed

Monfardini S: What do we know on variables influencing clinical decision-making in elderly cancer patients?. Eur J Cancer. 1996, 32A (1): 12-14. 10.1016/0959-8049(95)00580-3.CrossRefPubMed

10.

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.CrossRefPubMedPubMedCentral

11.

Deutsche Gesellschaft für Senologie [German Society of Senology]. [http://www.senologie.org]

12.

Institut für Frauengesundheit Baden-Württemberg [The Baden-Württemberg Institute for Women's Health]. [http://www.frauengesundheit-bw.de]

13.

BreastCancerTrials.org. [http://www.breastcancertrials.org]

14.

OncoLink.org. [http://www.oncolink.org]

15.

Studien.de. [http://www.studien.de]

16.

ClinicalTrials.gov. [http://www.clinicaltrials.gov]

17.

Ellaway R, Martin RD: What's mine is yours-open source as a new paradigm for sustainable healthcare education. Med Teach. 2008, 30 (2): 175-179. 10.1080/01421590701874058.CrossRefPubMed

18.

Murray PJ, Oyri K: Developing Online Communities with LAMP (Linux, Apache, MySQL, PHP) - the IMIA OSNI and CHIRAD Experiences. Stud Health Technol Inform. 2005, 116: 361-366.PubMed

19.

Kavadias CD, Koutsopoulos KA, Vlachos MP, Bourka A, Kollias V, Stassinopoulos G: A monitoring/auditing mechanism for SSL/TLS secured service sessions in Health Care Applications. Technol Health Care. 2003, 11 (1): 1-9.PubMed

20.

Nielsen J: Designing Web Usability: The Practice of Simplicity. 2000, Indianapolis: New Riders Publishing

21.

Locatis C, Fontelo P, Sneiderman C, Ackerman M, Uijtdehaage S, Candler C, Stensaas S, Dennis S: Webcasting videoconferences over IP: a synchronous communication experiment. J Am Med Inform Assoc. 2003, 10 (2): 150-153. 10.1197/jamia.M1170.CrossRefPubMedPubMedCentral

22.

Gillen JE, Tse T, Ide NC, McCray AT: Design, implementation and management of a web-based data entry system for ClinicalTrials.gov. Stud Health Technol Inform. 2004, 107 (Pt 2): 1466-1470.PubMed

23.

DocCheck^®. [http://www.doccheck.com]

24.

eEurope 2002: Quality Criteria for Health Related Websites. J Med Internet Res. 2002, 4 (3): E15-

25.

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. Lancet Oncol. 2006, 7 (2): 141-148. 10.1016/S1470-2045(06)70576-9.CrossRefPubMed

26.

Tu SW, Kemper CA, Lane NM, Carlson RW, Musen MA: A methodology for determining patients' eligibility for clinical trials. Methods Inf Med. 1993, 32 (4): 317-325.PubMed

27.

Joseph RR: Viewpoints and concerns of a clinical trial participant. Cancer. 1994, 74 (9 Suppl): 2692-2693. 10.1002/1097-0142(19941101)74:9+<2692::AID-CNCR2820741818>3.0.CO;2-M.CrossRefPubMed

28.

Eysenbach G: Tackling publication bias and selective reporting in health informatics research: register your eHealth trials in the International eHealth Studies Registry. J Med Internet Res. 2004, 6 (3): e35-10.2196/jmir.6.3.e35.CrossRefPubMedPubMedCentral

29.

Zhou YY, Garrido T, Chin HL, Wiesenthal AM, Liang LL: Patient access to an electronic health record with secure messaging: impact on primary care utilization. Am J Manag Care. 2007, 13 (7): 418-424.PubMed

30.

Bergmo TS, Kummervold PE, Gammon D, Dahl LB: Electronic patient-provider communication: will it offset office visits and telephone consultations in primary care?. Int J Med Inform. 2005, 74 (9): 705-710. 10.1016/j.ijmedinf.2005.06.002.CrossRefPubMed

31.

Uldal SB, Nikishova E, Rakova N, Mariandyshev A, Bye SM, Nisovtszevat N: Using e-mail in the management of tuberculosis patients, north-west Russia. Int J Tuberc Lung Dis. 2005, 9 (12): 1367-1372.PubMed

32.

Pizziferri L, Kittler A, Volk LA, Hobbs J, Jagannath Y, Wald JS, Middleton B, Bates DW: Physicians' perceptions toward electronic communication with patients. AMIA Annu Symp Proc. 2003, 972-

33.

Solovy A: E-mail minus 'e-mail'. California study shows that online communication can benefit patients, physicians and payers. Hosp Health Netw. 2002, 76 (11): 26-PubMed

34.

Risk A, Dzenowagis J: Review of internet health information quality initiatives. J Med Internet Res. 2001, 3 (4): E28-10.2196/jmir.3.4.e28.CrossRefPubMedPubMedCentral

35.

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 (4): 328-352. 10.1016/S0197-2456(96)00236-X.CrossRefPubMed

36.

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, 52 (12): 1143-1156. 10.1016/S0895-4356(99)00141-9.CrossRefPubMed

37.

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.CrossRefPubMedPubMedCentral

38.

Ohno-Machado L, Wang SJ, Mar P, Boxwala AA: Decision support for clinical trial eligibility determination in breast cancer. Proc Amia Symp. 1999, 340-344.

39.

Weiner DL, Butte AJ, Hibberd PL, Fleisher GR: Computerized recruiting for clinical trials in real time. Ann Emerg Med. 2003, 41 (2): 242-246. 10.1067/mem.2003.52.CrossRefPubMed

40.

Siminoff LA, Zhang A, Colabianchi N, Sturm CM, Shen Q: Factors that predict the referral of breast cancer patients onto clinical trials by their surgeons and medical oncologists. J Clin Oncol. 2000, 18 (6): 1203-1211.PubMed

41.

Paskett ED, Cooper MR, Stark N, Ricketts TC, Tropman S, Hatzell T, Aldrich T, Atkins J: Clinical trial enrollment of rural patients with cancer. Cancer Pract. 2002, 10 (1): 28-35. 10.1046/j.1523-5394.2002.101006.x.CrossRefPubMed

42.

Dolinsky CM, Wei SJ, Hampshire MK, Metz JM: Breast cancer patients' attitudes toward clinical trials in the radiation oncology clinic versus those searching for trial information on the Internet. Breast J. 2006, 12 (4): 324-330. 10.1111/j.1075-122X.2006.00270.x.CrossRefPubMed

The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1471-2407/10/663/prepub

Title: 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
Authors: Markus Wallwiener
Christian W Wallwiener
Sara Y Brucker
Andreas D Hartkopf
Tanja N Fehm
Julia K Kansy
Publication date: 01-12-2010
Publisher: BioMed Central
Published in: BMC Cancer / Issue 1/2010
Electronic ISSN: 1471-2407
DOI: https://doi.org/10.1186/1471-2407-10-663

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