Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study

Background: As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors. Objective: The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors. Methods: Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method. Results: CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information. Conclusions: For CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management

The Use of Cancer-Specific Patient-Centered Technologies Among Underserved Populations in the United States: Systematic Review

Background: In the United States, more than 1.6 million new cases of cancer are estimated to be diagnosed each year. However, the burden of cancer among the US population is not shared equally, with racial and ethnic minorities and lower-income populations having a higher cancer burden compared with their counterparts. For example, African Americans have the highest mortality rates and shortest survival rates for most cancers compared with other racial or ethnic groups in the United States. A wide range of technologies (eg, internet-based [electronic health, eHealth] technologies, mobile [mobile health, mHealth] apps, and telemedicine) available to patients are designed to improve their access to care and empower them to participate actively in their care, providing a means to reduce health care disparities; however, little is known of their use among underserved populations. Objective: The aim of this study was to systematically review the current evidence on the use of cancer-specific patient-centered technologies among various underserved populations. Methods: Computer-based search was conducted in the following academic databases: (1) PubMed (cancer subset), (2) MEDLINE, (3) PsycINFO, and (4) CINAHL. We included studies that were peer-reviewed, published in the English language, and conducted in the United States. Each study was individually assessed for relevance, with any disagreements being reconciled by consensus. We used a 3-step inclusion process in which we examined study titles, abstracts, and full-text papers for assessment of inclusion criteria. We systematically extracted information from each paper meeting our inclusion criteria. Results: This review includes 71 papers that use patient-centered technologies that primarily targeted African Americans (n=31), rural populations (n=14), and Hispanics (n=12). A majority of studies used eHealth technologies (n=41) finding them to be leading sources of cancer-related health information and significantly improving outcomes such as screening among nonadherent individuals and increasing knowledge about cancer and cancer screening. Studies on mHealth found that participants reported overall favorable responses to receiving health information via short message service (SMS) text message; however, challenges were experienced with respect to lack of knowledge of how to text among some participants. More complex mobile technologies (eg, a tablet-based risk assessment tool) were also found favorable to use and acceptable among underserved populations; however, they also resulted in more significant barriers, for example, participants expressed concerns regarding security and unfamiliarity with the technology and preferred further instruction and assistance in its use. Conclusions: There is a growing body of literature exploring patient-centered technology and its influence on care of underserved populations. In this review, we find that these technologies seem to be effective, especially when tailored, in improving patient and care-related outcomes. Despite the potential of patient-centered technologies and the receptivity of underserved populations, challenges still exist with respect to their effective use and usability

Primary care physician perceptions of adult survivors of childhood cancer

Increasing cure rates for childhood cancers have resulted in a population of adult childhood cancer survivors (CCS) that are at risk for late effects of cancer-directed therapy. Our objective was to identify facilitators and barriers to primary care physicians (PCPs) providing late effects screening and evaluate information tools PCPs perceive as useful. We analyzed surveys from 351 practicing internal medicine and family practice physicians nationwide. A minority of PCPs perceived that their medical training was adequate to recognize late effects of chemotherapy (27.6%), cancer surgery (36.6%), and radiation therapy (38.1%). Most PCPs (93%) had never used Children's Oncology Group guidelines, but 86% would follow their recommendations. Most (84% to 86%) PCPs stated that they had never received a cancer treatment summary or survivorship care plan but (>90%) thought these documents would be useful. PCPs have a low level of awareness and receive inadequate training to recognize late effects. Overall, PCPs infrequently utilize guidelines, cancer treatment summaries, and survivorship care plans, although they perceive such tools as useful. We have identified gaps to address when providing care for CCS in routine general medical practice

The accuracy and completeness for receipt of colorectal cancer care using Veterans Health Administration administrative data.

The National Comprehensive Cancer Network and the American Society of Clinical Oncology have established guidelines for the treatment and surveillance of colorectal cancer (CRC), respectively. Considering these guidelines, an accurate and efficient method is needed to measure receipt of care

Rural and Urban Differences in the Adoption of New Health Information and Medical Technologies

Background This statewide survey sought to understand the adoption level of new health information and medical technologies, and whether these patterns differed between urban and rural populations. Methods A random sample of 7,979 people aged 18‐75 years, stratified by rural status and race, who lived in 1 of 34 Indiana counties with high cancer mortality rates and were seen at least once in the past year in a statewide health system were surveyed. Results Completed surveys were returned by 970 participants. Rural patients were less likely than urban to use electronic health record messaging systems (28.3% vs 34.5%, P = .045) or any communication technology (43.0% vs 50.8%, P = .017). Rural patients were less likely to look for personal health information for someone else's medical record (11.0% vs 16.3%, P = .022), look‐up test results (29.5% vs 38.3%, P = .005), or use any form of electronic medical record (EMR) access (57.5% vs 67.1%, P = .003). Rural differences in any use of communication technology or EMRs were no longer significant in adjusted models, while education and income were significantly associated. There was a trend in the higher use of low‐dose computed tomography (CT) scan among rural patients (19.1% vs 14.4%, P = .057). No significant difference was present between rural and urban patients in the use of the human papilloma virus test (27.1% vs 26.6%, P = .880). Conclusions Differences in health information technology use between rural and urban populations may be moderated by social determinants. Lower adoption of new health information technologies (HITs) than medical technologies among rural, compared to urban, individuals may be due to lower levels of evidence supporting HITs

Oncologists' perspectives on post-cancer treatment communication and care coordination with primary care physicians

Post-treatment cancer care is often fragmented and of suboptimal quality. We explored factors that may affect cancer survivors' post-treatment care coordination, including oncologists' use of electronic technologies such as e-mail and integrated electronic health records (EHRs) to communicate with primary care physicians (PCPs). We used data from a survey (357 respondents; participation rate 52.9%) conducted in 2012-2013 among medical oncologists caring for patients in a large US study of cancer care delivery and outcomes. Oncologists reported their frequency and mode of communication with PCPs, and role in providing post-treatment care. Seventy-five per cent said that they directly communicated with PCPs about post-treatment status and care recommendations for all/most patients. Among those directly communicating with PCPs, 70% always/usually used written correspondence, while 36% always/usually used integrated EHRs; telephone and e-mail were less used. Eighty per cent reported co-managing with PCPs at least one post-treatment general medical care need. In multivariate-adjusted analyses, neither communication mode nor intensity were associated with co-managing survivors' care. Oncologists' reliance on written correspondence to communicate with PCPs may be a barrier to care coordination. We discuss new research directions for enhancing communication and care coordination between oncologists and PCPs, and to better meet the needs of cancer survivors post-treatment

Utilizing a user-centered approach to develop and assess pharmacogenomic clinical decision support for thiopurine methyltransferase

BACKGROUND: A pharmacogenomic clinical decision support tool (PGx-CDS) for thiopurine medications can help physicians incorporate pharmacogenomic results into prescribing decisions by providing up-to-date, real-time decision support. However, the PGx-CDS user interface may introduce errors and promote alert fatigue. The objective of this study was to develop and evaluate a prototype of a PGx-CDS user interface for thiopurine medications with user-centered design methods. METHODS: This study had two phases: In phase I, we conducted qualitative interviews to assess providers' information needs. Interview transcripts were analyzed through a combination of inductive and deductive qualitative analysis to develop design requirements for a PGx-CDS user interface. Using these requirements, we developed a user interface prototype and evaluated its usability (phase II). RESULTS: In total, 14 providers participated: 10 were interviewed in phase I, and seven providers completed usability testing in phase II (3 providers participated in both phases). Most (90%) participants were interested in PGx-CDS systems to help improve medication efficacy and patient safety. Interviews yielded 11 themes sorted into two main categories: 1) health care providers' views on PGx-CDS and 2) important design features for PGx-CDS. We organized these findings into guidance for PGx-CDS content and display. Usability testing of the PGx-CDS prototype showed high provider satisfaction. CONCLUSION: This is one of the first studies to utilize a user-centered design approach to develop and assess a PGx-CDS interface prototype for Thiopurine Methyltransferase (TPMT). This study provides guidance for the development of a PGx-CDS, and particularly for biomarkers such as TPMT

Racial and Socioeconomic Disparities in Cancer-Related Knowledge, Beliefs, and Behaviors in Indiana

Background: This statewide survey examined differences in cancer-related knowledge, beliefs, and behaviors between racial and socioeconomic groups in select counties in Indiana. Methods: A stratified random sample of 7,979 people aged 18–75 who lived in one of 34 Indiana counties with higher cancer mortality rates than the state average, and were seen at least once in the past year in a statewide health system were mailed surveys. Results: Completed surveys were returned by 970 participants, yielding a 12% response rate. Black respondents were less likely to perceive they were at risk for cancer and less worried about getting cancer. Individuals most likely to perceive that they were unlikely to get cancer were more often black, with low incomes (less than $20,000) or high incomes ($50,000 or more), or less than a high school degree. Black women were greater than six times more likely to be adherent to cervical cancer screening. Higher income was associated with receiving a sigmoidoscopy in the last 5 years and a lung scan in the past year. Those with the highest incomes were more likely to engage in physical activity. Both income and education were inversely related to smoking. Conclusions: Socioeconomic and racial disparities were observed in health behaviors and receipt of cancer screening. Black individuals had less worry about cancer. Impact: Understanding populations for whom cancer disparities exist and geographic areas where the cancer burden is disproportionately high is essential to decision-making about research priorities and the use of public health resources

Case study: ENVRI science demonstrators with D4Science

Whenever a community of practice starts developing an IT solution for its use case(s) it has to face the issue of carefully selecting “the platform” to use. Such a platform should match the requirements and the overall settings resulting from the specific application context (including legacy technologies and solutions to be integrated and reused, costs of adoption and operation, easiness in acquir- ing skills and competencies). There is no one-size-fits-all solution that is suitable for all application context, and this is particularly true for scientific communities and their cases because of the wide heterogeneity characterising them. However, there is a large consensus that solutions from scratch are inefficient and services that facilitate the development and maintenance of scientific community-specific solutions do exist. This chapter describes how a set of diverse communities of practice efficiently developed their science demonstrators (on analysing and pro- ducing user-defined atmosphere data products, greenhouse gases fluxes, particle formation, mosquito diseases) by leveraging the services offered by the D4Science infrastructure. It shows that the D4Science design decisions aiming at streamlin- ing implementations are effective. The chapter discusses the added value injected in the science demonstrators and resulting from the reuse of D4Science services, especially regarding Open Science practices and overall quality of service

Redesign of a computerized clinical reminder for colorectal cancer screening: a human-computer interaction evaluation

<p>Abstract</p> <p>Background</p> <p>Based on barriers to the use of computerized clinical decision support (CDS) learned in an earlier field study, we prototyped design enhancements to the Veterans Health Administration's (VHA's) colorectal cancer (CRC) screening clinical reminder to compare against the VHA's current CRC reminder.</p> <p>Methods</p> <p>In a controlled simulation experiment, 12 primary care providers (PCPs) used prototypes of the current and redesigned CRC screening reminder in a within-subject comparison. Quantitative measurements were based on a usability survey, workload assessment instrument, and workflow integration survey. We also collected qualitative data on both designs.</p> <p>Results</p> <p>Design enhancements to the VHA's existing CRC screening clinical reminder positively impacted aspects of usability and workflow integration but not workload. The qualitative analysis revealed broad support across participants for the design enhancements with specific suggestions for improving the reminder further.</p> <p>Conclusions</p> <p>This study demonstrates the value of a human-computer interaction evaluation in informing the redesign of information tools to foster uptake, integration into workflow, and use in clinical practice.</p