Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer.

BACKGROUND: Less than 5% of breast cancer patients participate in clinical trials. To increase patients' awareness and access to trials, we created BreastCancerTrials.org, a clinical trial matching website. BreastCancerTrials.org matched patients to trials based on their self-reported breast cancer history. It also provided a messaging platform through which patients could self-refer themselves to participating research sites. OBJECTIVE: To assess adoption by research sites, acceptability to patients, and patients' accuracy in providing information to BreastCancerTrials.org. METHODS: We approached 13 research sites in Northern California to list their trials on BreastCancerTrials.org. For adoption, we examined the willingness of contacted research sites to collaborate with BreastCancerTrials.org. For acceptability, we analyzed usage statistics of visitors who completed the BreastCancerTrials.org health history questionnaire in the first 14 months after launch and surveyed users who visited the website during its first year about their experience. For accuracy, we compared the self-reported health history of 20 patients against their medical records. The health history questionnaire was divided into four sections: About Me, personal information including date of birth and sex; My Health as of Today, current status including cancer stage, menopausal status, and sites with evidence of disease; My Cancer, diagnostic information such as hormone and human epidermal growth factor receptor 2 status; and My Treatment, an itemized record of past treatment including responses to therapy. RESULTS: A total of 12 sites contributed 55 trials. Regarding acceptability, 733 visitors registered on the website; 428 reported their health history; and 407 matched to at least one trial. Of 375 patients who were sent a survey, 75 responded (20%); 23 of the 75 (31%) contacted a research site, 12 of the 23 (52%) were eligible for a trial, and 5 of the 12 (42%) reported enrolling. As for accuracy, 20 clinic visitors reported 1456 health history items, 1324 of which matched their clinic record (90.93%). CONCLUSIONS: BreastCancerTrials.org was adopted by research sites. Patients found it acceptable and were able to provide accurate information for trial matching. Based on our findings, we launched an upgraded version of BreastCancerTrials.org as a national service in October 2008.

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

BACKGROUND: Internet-based clinical trial matching systems have the potential to streamline the search process for women with breast cancer seeking alternative treatments. A prototype system was developed to leverage the capabilities of a personal health record system for the purpose of identifying clinical trials. OBJECTIVE: This study examines how breast cancer patients perceive and interact with a preliminary version of an Internet-based clinical trial matching system, while taking into account the demands of diagnosis and treatment decision making. METHODS: Breast cancer patients participated in small group discussions and interacted with the prototype website in a two-phase qualitative research process. The first phase explored the experience of breast cancer patients (n = 8) with treatment decision making, initial responses to the idea of Internet-based clinical trial matching systems, and reactions to the prototype site. In the second phase, a different set of breast cancer patients (n = 7) reviewed revised website content and presentation and participated in a usability test in which they registered on the system and completed a personal health record to set up the matching process. RESULTS: Participants were initially skeptical of the prototype system because it emphasized registration, had a complicated registration process, and asked for complex medical information. Changing content and attending to usability guidelines improved the experience for women in the second phase of the research and enabled the identification of functionality and content issues, such as lack of clear information and directions on how to use the system. CONCLUSIONS: This study showed that women felt favorably about the idea of using the Internet to search for clinical trials but that such a system needed to meet their expectations for credibility and privacy and be sensitive to their situation. Developers can meet these expectations by conforming to established usability guidelines and testing improvements with breast cancer patients. Future research is needed to verify these findings and to continue to improve systems of this nature.

Developing the health information infrastructure in the United States.

Consumers, patients, and their families; health care providers and managers; public health professionals and policy makers need integrated multi-function health information structures that allow them to locate and apply information when and where they need it to make better decisions about health. The National Committee on Vital and Health Statistics (NCVHS), which advises the Secretary of Health and Human Services (HHS) on health information policy, is promoting a comprehensive vision of the National Health Information Infrastructure (NHII). The NHII is defined as the set of technologies, standards, applications, systems, values, and laws that support all facets of individual health, health care, and public health. It is not a unitary database. The broad goal of the NHII is to deliver information to consumers, patients, professionals, and other health decision-makers when and where they need it. The NCVHS' Interim Report presented three overlapping "dimensions" of the NHII: the personal health dimension, the health care provider dimension, and the community health dimension, to highlight the functions and value of information linkages from various perspectives. The content of an NHII includes clinical, population, and personal data, practice guidelines, biomedical, health services, and other research findings; and consumer health information. This data is, and will likely remain, stored in many locations. To succeed, such an effort will require coordinated, collaborative action. The NCVHS' final report to the HHS Secretary will include recommendations for Federal leadership and for other relevant stakeholders, including public health agencies; health care providers, plans and purchasers; the IT industry; standards development organizations; and consumer groups.

E-pharmacy: improving patient care and managing risk.

While far behind certain other sectors of the American economy, health care will increasingly use information technology for content provision, communication, commerce, and complete integration of systems. In emerging electronically based health care systems, pharmacists have a great opportunity because of their specialized knowledge, accessibility, and the trust people have in them. A variety of technologic innovations under development will help create a safer medication-use system. Although consumers are increasingly using the Internet for health-related purposes, they need to be cautious when making important decisions using Web-based interactions.