Information technologies that facilitate care coordination: provider and patient perspectives

Health information technology is a core infrastructure for the chronic care model, integrated care, and other organized care delivery models. From the provider perspective, health information exchange (HIE) helps aggregate and share information about a patient or population from several sources. HIE technologies include direct messages, transfer of care, and event notification services. From the patient perspective, personal health records, secure messaging, text messages, and other mHealth applications may coordinate patients and providers. Patient-reported outcomes and social media technologies enable patients to share health information with many stakeholders, including providers, caregivers, and other patients. An information architecture that integrates personal health record and mHealth applications, with HIEs that combine the electronic health records of multiple healthcare systems will create a rich, dynamic ecosystem for patient collaboration

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

IUPUI Center for Cancer Population Analytics and Patient-Centered Informatics

poster abstractAbstract: More than 30,000 Indiana residents are diagnosed with cancer each year. Cancer is the second leading cause of death in the state, claiming more than 12,000 lives annually. More than $1 billion was spent in Indiana on direct costs of treating the cancer population in 2003. Indirect costs to cancer patients and their families are also of great importance. Cancer care coordination has the potential to reduce costs and improve quality in cancer care delivery. Coordination may occur both among (1) multiple cancer care providers caring for populations of cancer patients, and (2) between providers and individual patients with cancer The IUPUI Center for Cancer Population Analytics and Patient-Centered Informatics was established in 2013. The center’s mission is to develop team science that combines innovative health information technologies with rigorous health services research methods in order to create knowledge that will have an impact upon the health and health care of patients and populations with cancer in the state of Indiana and the U.S. The center’s goals are (1) to build collaborative, multidisciplinary scientific teams to create national leaders in the state of Indiana in the fields of cancer health services research and informatics, and (2) to perform top-tier national cancer health services research and “big data” analytics to improve the quality, efficiency, coordination, and outcomes of cancer care The Center Cores: To build our research portfolio, we have the following 2 main cores of activity: I. Cancer Population Analytics Core: Data sources from multiple health care organizations throughout central Indiana are being joined together to answer important clinical/epidemiologic questions regarding the quality of cancer care, and design population-based, system interventions to improve the lives of Indiana cancer patients. Further support has been leveraged for this work, namely, the IU Cancer Center has provided a pilot grant to link the Indiana state cancer registry with data from the Regenstrief Institute’s Indiana Network for Patient Care in order to study the utilization of high-cost imaging among cancer survivors. Furthermore, support from a Regenstrief/Merck collaboration will facilitate assessment of the quality of the data linkage at the level of both the patient and cancer case. II. Cancer Patient-Centered Informatics Core: Multiple platforms are being leveraged to develop and test patient-centered technologies to enable individuals to track health care received and communicate with providers. Utilizing OpenMRS, a personal health record (PHR) module was created for colorectal cancer patients including treatment summary information, evidence-based decision support regarding surveillance, and online communication tools. Additional development is being focused upon updating the user interface, creating patient social networks, and providing tools to support patient well-being. Support has also been obtained from the Walther Cancer Foundation to collect information about patient symptoms and from the Regenstrief/Merck collaboration to collect patient-reported outcome measures. Finally, an NIH proposal has been developed for the SUrvivorship Care Plan-PERsonal Health Record Intervention Trial (SUPER-IT), a randomized controlled trial designed to test the effect of this new technology upon both the quality of care received and patient-centered outcomes

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

Peters anomaly in PHACE syndrome

PHACE syndrome is a rare neurocutaneous disorder, with a complex pathogenesis. It presents with a large facial hemangioma associated with anomalies of the posterior fossa of the brain, arterial anomalies, cardiac anomalies, coarctation of the aorta, and eye anomalies. Ocular abnormalities are rare. We report the first published case of an infant with PHACE syndrome and Peters anomaly

The Implications of Insurance Status on Presentation, Surgical Management and Mortality among Non-Metastatic Breast Cancer Patients in Indiana

Background The National Breast and Cervical Cancer Early Detection Program seeks to reduce health care disparities by providing uninsured and underinsured women access to screening mammograms. The objective of this study is to identify the differences in presentation, surgical management, and mortality among nonmetastatic uninsured patients diagnosed through Indiana's Breast and Cervical Cancer Program compared with patients with private and government (Medicare or Medicaid) insurance. Methods Study data were obtained using the Indiana state cancer registry and Indiana's Breast and Cervical Cancer Program. Women aged 50 to 64 with an index diagnosis of stage 0 to III breast cancer from January 1, 2006 to December 31, 2013, were included in the study. Bivariate intergroup analysis was conducted. Kaplan-Meier estimates between insurance types were compared using the log rank test. All-cause mortality was evaluated using a mixed effects model. Results The groups differed significantly for sociodemographic and clinical variables. Uninsured Indiana Breast and Cervical Cancer Program patients presented with later disease stage (P < .001) and had the highest overall mortality (hazard ratio 2.2, P = .003). Surgical management only differed among stage III patients (P = .012). Conclusion To improve insurance-based disparities in Indiana, implementation of the Breast and Cervical Cancer Program in conjunction with expansion of insurance coverage to vulnerable low-income populations need to be optimized

Toward Timely Data for Cancer Research: Assessment and Reengineering of the Cancer Reporting Process

Background Cancer registries systematically collect cancer-related data to support cancer surveillance activities. However, cancer data are often unavailable for months to years after diagnosis, limiting its utility. Objective The objective of this study was to identify the barriers to rapid cancer reporting and identify ways to shorten the turnaround time. Methods Certified cancer registrars reporting to the Indiana State Department of Health cancer registry participated in a semistructured interview. Registrars were asked to describe the reporting process, estimate the duration of each step, and identify any barriers that may impact the reporting speed. Qualitative data analysis was performed with the intent of generating recommendations for workflow redesign. The existing and redesigned workflows were simulated for comparison. Results Barriers to rapid reporting included access to medical records from multiple facilities and the waiting period from diagnosis to treatment. The redesigned workflow focused on facilitating data sharing between registrars and applying a more efficient queuing technique while registrars await the delivery of treatment. The simulation results demonstrated that our recommendations to reduce the waiting period and share information could potentially improve the average reporting speed by 87 days. Conclusions Knowing the time elapsing at each step within the reporting process helps in prioritizing the needs and estimating the impact of future interventions. Where some previous studies focused on automating some of the cancer reporting activities, we anticipate much shorter reporting by leveraging health information technologies to target this waiting period

Masculinity Beliefs and Colorectal Cancer Screening in Male Veterans

As the third most common cause of cancer death among United States men, colorectal cancer (CRC) represents a significant threat to men's health. Although adherence to CRC screening has the potential to reduce CRC mortality by approximately half, men's current rates of adherence fall below national screening objectives. In qualitative studies, men have reported forgoing screenings involving the rectum (e.g., colonoscopy) due to concern about breaching masculinity norms. However, the extent to which masculinity beliefs predict men's CRC screening adherence has yet to be examined. The current study tested the hypothesis that greater endorsement of masculinity beliefs (i.e., self-reliance, risk-taking, heterosexual self-presentation, and primacy of work) would be associated with a lower likelihood of adherence to CRC screening with any test and with colonoscopy specifically. Participants were 327 men aged 51-75 at average risk for CRC who were accessing primary care services at a Midwestern Veterans Affairs Medical Center. Contrary to hypotheses, masculinity beliefs did not predict CRC screening outcomes in hierarchical regression analyses that controlled for demographic predictors of screening. Although results are largely inconsistent with masculinity theory and prior qualitative findings, further research is needed to determine the degree to which findings generalize to other populations and settings

Clinicians as Secondary Users of Patient-Centered Mobile Technology in Complex Healthcare Settings

This paper describes the preliminary research findings and prototype development of a Personal Health Record mobile application. A pilot study about patient-clinician interaction guided by common ground theory was performed. The goal of the pilot study was to gather requirements to support development of a smartphone application to be used in a future experimental study. Findings from the pilot study suggest that smartphones could be used to manage health information considered important for a successful healthcare consultation