Leveraging an Informatics Approach to Identify an Unmet Clinical Need for BRCA1/2 Testing Among Patients With Ovarian Cancer.

PURPOSE: Although BRCA1/2 testing in ovarian cancer improves outcomes, it is vastly underutilized. Scalable approaches are urgently needed to improve genomically guided care. METHODS: We developed a Natural Language Processing (NLP) pipeline to extract electronic medical record information to identify recipients of BRCA testing. We applied the NLP pipeline to assess testing status in 308 patients with ovarian cancer receiving care at a National Cancer Institute Comprehensive Cancer Center (main campus [MC] and five affiliated clinical network sites [CNS]) from 2017 to 2019. We compared characteristics between (1) patients who had/had not received testing and (2) testing utilization by site. RESULTS: We found high uptake of BRCA testing (approximately 78%) from 2017 to 2019 with no significant differences between the MC and CNS. We observed an increase in testing over time (67%-85%), higher uptake of testing among younger patients (mean age tested = 61 years v untested = 65 years, P = .01), and higher testing among Hispanic (84%) compared with White, Non-Hispanic (78%), and Asian (75%) patients (P = .006). Documentation of referral for an internal genetics consultation for BRCA pathogenic variant carriers was higher at the MC compared with the CNS (94% v 31%). CONCLUSION: We were able to successfully use a novel NLP pipeline to assess use of BRCA testing among patients with ovarian cancer. Despite relatively high levels of BRCA testing at our institution, 22% of patients had no documentation of genetic testing and documentation of referral to genetics among BRCA carriers in the CNS was low. Given success of the NLP pipeline, such an informatics-based approach holds promise as a scalable solution to identify gaps in genetic testing to ensure optimal treatment interventions in a timely manner.

Visualizations Integrated Into Consumer Health Technologies Support Self-management of Chronic Diseases: A Systematic Review.

While chronic diseases remain a global problem, visualizations of data and information are a potential solution to assist patients with chronic disease in communication, self-management, and decision making. The purpose of this systematic review is to synthesize evidence regarding data and information visualizations integrated into consumer health informatics solutions for chronic disease management in the community. A search was conducted in CINAHL, EMBASE, Engineering Village, PsycINFO, PubMed, and Web of Science between January 1, 2007, and May 1, 2019. Studies were evaluated using the Mixed Methods Appraisal Tool. Of the 2549 published studies, six studies met inclusion criteria. Of these six studies, two used information visualizations, two used data visualizations, and two used both information and data visualizations. Graphs were the main type of visualization used. Visualizations were mainly delivered in mobile applications and were interactive. The goals of the visualizations varied across studies including to (1) improve understanding of health data, (2) improve patient-provider communication, (3) monitor chronic disease, and/or (4) improve chronic disease management. Five studies reported subjective outcomes of the visualizations (eg, perceived usability, acceptability). One study reported both subjective and objective outcomes (eg, recall) of the visualizations. Findings highlight the need for more research on data and information visualizations integrated into consumer health technologies that support chronic disease management in daily life.

Choosing Channels, Sources, and Content for Communicating Prostate Cancer Information to Black Men: A Systematic Review of the Literature.

The purpose of this study was to identify effective channels, sources, and content approaches for communicating prostate cancer prevention information to Black men. The Web of Science, PubMed and GoogleScholar databases, as well as reviews of reference lists for selected publications, were searched to select articles relevant to cancer communication channels, sources or content for Black men, focused on male-prevalent cancers and published in English. Articles were excluded if they examined only patient-provider communication, dealt exclusively with prostate cancer patients or did not separate findings by race. The selection procedures identified 41 relevant articles, which were systematically and independently reviewed by two team members to extract data on preferred channels, sources, and content for prostate cancer information. This review revealed that Black men prefer interpersonal communication for prostate cancer information; however, video can be effective. Trusted sources included personal physicians, clergy, and other community leaders, family (especially spouses) and prostate cancer survivors. Men want comprehensive information about screening, symptoms, treatment, and outcomes. Messages should be culturally tailored, encouraging empowerment and "ownership" of disease. Black men are open to prostate cancer prevention information through mediated channels when contextualized within spiritual/cultural beliefs and delivered by trusted sources.

Quantitative Information on Oncology Prescription Drug Websites.

Our objective was to determine whether and how quantitative information about drug benefits and risks is presented to consumers and healthcare professionals on cancer-related prescription drug websites. We analyzed the content of 65 active cancer-related prescription drug websites. We assessed the inclusion and presentation of quantitative information for two audiences (consumers and healthcare professionals) and two types of information (drug benefits and risks). Websites were equally likely to present quantitative information for benefits (96.9 %) and risks (95.4 %). However, the amount of the information differed significantly: Both consumer-directed and healthcare-professional-directed webpages were more likely to have quantitative information for every benefit (consumer 38.5 %; healthcare professional 86.1 %) compared with every risk (consumer 3.1 %; healthcare professional 6.2 %). The numeric and graphic presentations also differed by audience and information type. Consumers have access to quantitative information about oncology drugs and, in particular, about the benefits of these drugs. Research has shown that using quantitative information to communicate treatment benefits and risks can increase patients' and physicians' understanding and can aid in treatment decision-making, although some numeric and graphic formats are more useful than others.

Consumer Health-Related Activities on Social Media: Exploratory Study.

BACKGROUND: Although a number of studies have investigated how consumers use social media for health-related purposes, there is a paucity of studies in the Australian context. OBJECTIVE: This study aimed to explore how Australian consumers used social media for health-related purposes, specifically how they identified social media platforms, which were used, and which health-related activities commonly took place. METHODS: A total of 5 focus groups (n=36 participants), each lasting 60 to 90 minutes, were conducted in the Sydney metropolitan area. The group discussions were audiorecorded and transcribed verbatim. The transcripts were coded line-by-line and thematically analyzed. RESULTS: Participants used general search engines to locate health-related social media platforms. They accessed a wide range of social media on a daily basis, using several electronic devices (in particular, mobile phones). Although privacy was a concern, it did not prevent consumers from fully engaging in social media for health-related purposes. Blogs were used to learn from other people's experiences with the same condition. Facebook allowed consumers to follow health-related pages and to participate in disease-specific group discussions. Wikipedia was used for factual information about diseases and treatments. YouTube was accessed to learn about medical procedures such as surgery. No participant reported editing or contributing to Wikipedia or posting YouTube videos related to health topics. Twitter was rarely used for health-related purposes. Social media allowed consumers to obtain and provide disease and treatment-related information and social and emotional support for those living with the same condition. Most considered their participation as observational, but some also contributed (eg, responded to people's questions). CONCLUSIONS: Participants used a wide range of social media for health-related purposes. Medical information exchange (eg, disease and treatment) and social and emotional support were the cornerstones of their online activities. Social media appears to be used as a key tool to support disease self-management.

Implementation and evaluation of a prototype consumer reporting system for patient safety events.

OBJECTIVE: No methodologically robust system exists for capturing consumer-generated patient safety reports. To address this challenge, we developed and pilot-tested a prototype consumer reporting system for patient safety, the Health Care Safety Hotline. DESIGN: Mixed methods evaluation. SETTING: The Hotline was implemented in two US healthcare systems from 1 February 2014 through 30 June 2015. PARTICIPANTS: Patients, family members and caregivers associated with two US healthcare systems. INTERVENTION: A consumer-oriented incident reporting system for telephone or web-based administration was developed to elicit medical mistakes and care-related injuries. MAIN OUTCOMES MEASURES: Key informant interviews, measurement of website traffic and analysis of completed reports. RESULTS: Key informants indicated that Hotline participation was motivated by senior leaders' support and alignment with existing quality and safety initiatives. During the measurement period from 1 October 2014 through 30 June 2015, the home page had 1530 visitors with a unique IP address. During its 17 months of operation, the Hotline received 37 completed reports including 20 mistakes without harm and 15 mistakes with injury. The largest category of mistake concerned problems with diagnosis or advice from a health practitioner. Hotline reports prompted quality reviews, an education intervention, and patient follow-ups. CONCLUSION: While generating fewer reports than its capacity to manage, the Health Care Safety Hotline demonstrated the feasibility of consumer-oriented patient safety reporting. Further research is needed to understand how to increase consumers' use of these systems.