Using a bi-directional digital health platform for cancer care coordination and monitoring to enhance the cancer care continuum between patients, clinicians and caregivers.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14105-e14105
Author(s):  
Sharon Hensley Alford ◽  
Shilpa Mahatma ◽  
Rohit Mahatma ◽  
Sagar Amode ◽  
Rupal Sethia ◽  
...  
Keyword(s):  
Medical History ◽  
Cancer Patients ◽  
Treatment Planning ◽  
Care Coordination ◽  
Cancer Care ◽  
Medical Records ◽  
Digital Health ◽  
Innovative Technology ◽  
Non Profit ◽  
Case Summary

e14105 Background: It has been recognized that current electronic medical record (EMR) systems detract from the patient-provider relationship and that an innovative technology is needed to re-center medical encounters on the patient-provider engagement. This is especially important in oncology during new patient onboarding, care coordination in between medical visits and survivorship planning. Methods: We built a HIPAA compliant role-based digital health platform to support providers in patient engagement and care coordination. In this pilot at a non-profit oncology center in India, nurse navigators onboarded the patients using the mobile application. The technology was used to digitize past medical records and parse the clinical history. In addition, self-reported patient past medical history, family history, as well as social, reproductive and surgical history was collected as needed. The system collated the information into an easy to consume case summary for the oncologists. The system was tested with 3 clinicians and consented cancer patients. Results: Nearly 200 cancer patients participated in the pilot study. Patients’ medical records were digitized by oncology nurse navigators. The summarized longitudinal view of the patient’s medical history was used by oncologists for diagnosis and treatment planning. Participating clinicians noted that the digital case summary saved time and effort in treatment planning. In addition, it was noted that collaboration between nursing staff, medical oncologist, surgical oncologist and radiation oncologist was substantially improved. Conclusions: We demonstrate the value of using digital health technology to support the care coordination of cancer patients in a low-resource, non-profit clinical center in India.

An innovative approach to manage cancer patient information for care coordination and monitoring using a digital health platform for a nonprofit tertiary cancer care institute in India.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14102-e14102
Author(s):  
Sharon Hensley Alford ◽  
Rishi Kumar Gupta ◽  
Nayan Sonawane ◽  
Srishti Mahatma ◽  
Shilpa Mahatma ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Cancer Care ◽  
Medical Information ◽  
Early Stage ◽  
Digital Health ◽  
Ease Of Use ◽  
Cancer Information ◽  
New Delhi ◽  
Non Profit ◽  
Treatment Information

e14102 Background: In India, most patients maintain a personal copy of their medical record in paper form which is hard to manage and collate. Newly diagnosed cancer patients and their doctors have an insurmountable task of consuming and using that information. Making this information available in an easy to consume format as well as recording a patient’s cancer experience is a technical challenge. We piloted an innovative mobile application to address this pain point. Methods: A pilot engagement was performed with 100+ cancer patients visiting a non-profit oncology center between March 2019 and January 2020 in a suburb of New Delhi, India. Systematic medical information was captured on stage, TNM, molecular markers, tumor size, tests, and treatments. We assessed the utility of a digital health application for the purpose of cancer information management and ease of use by the medical team. Results: Data for a total of 65 patients with a single cancer and diagnosis and treatment information was captured. Patients were between the ages of 23 and 78, mean age 49. Of these patients, there were 21 (32%) early stage cases ( < Stage 3), 23 (35%) late stage cases ( > Stage 2), and 21 (32%) cases with missing stage. Overall, 39 (60%) received a chemotherapy only regimen, 2 (3%) radiation only, 6 (9%) surgery only, 6 (9%) received chemotherapy and radiation, 11 (17%) received surgery and chemotherapy, and 1 (1%) patient received surgery, chemotherapy, and radiation. Clinic staff reported that the application was easy to use and helpful. We continue to enhance the application with staff feedback. Conclusions: We demonstrate the feasibility and value of moving to a next generation digitized mobile platform circumventing the need for a traditional EMR system at a busy non-profit oncology clinic in the suburbs of New Delhi, India. Using the pilot, we make a case that this type of technology has the ability to transform cancer care for rural and low-resource cancer centers. We also demonstrate that it is easy to capture patient longitudinal data using this innovative platform.

Perceptions of cancer care coordination in patient-family caregiver dyads.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e14036-e14036
Author(s):  
Izumi Okado ◽  
Ian Pagano ◽  
Tracey Hewitt ◽  
Kelnia Azevedo ◽  
Cherie Guillermo ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Care Coordination ◽  
Family Caregiver ◽  
Cancer Care ◽  
Care Delivery ◽  
Bimodal Distribution ◽  
Self Report ◽  
Patient Navigator ◽  
Cross Sectional ◽  
Caregiver Involvement

e14036 Background: Family caregivers (FCGs) can play a key role in coordinating care for cancer patients. However, little is known about FCGs’ perspectives of care coordination (CC). In this cross-sectional study, we evaluated perceptions of CC in cancer patient-family caregiver dyads using the Care Coordination Instrument (CCI), a validated self-report measure with excellent psychometric properties. Methods: Patients receiving active treatment for cancer and their primary FCGs ( N = 54 dyads) completed the 29-item CCI (patient) and the CCICG (a parallel FCG version) at private oncology practices or hospital-based facilities from June to Sept. 2019. The CCI and CCICG assess overall perceptions of CC (Total) and across 3 domains: Communication, Navigation, and Operational. The CCICG includes a supplemental questionnaire that assesses the degree of caregiver CC involvement on a 4-point Likert scale. Mixed regression models were used to examine differences between patients and FCGs’ perceptions of CC and to identify predictors of dyadic differences on the CCI scores. Pearson’s correlation was used to evaluate associations between FCGs’ perceptions of CC and the degree of caregiver involvement. Results: CCICG Total scores demonstrated a bimodal distribution, representing FCGs’ perceptions of CC in distinct high and low subgroups; thus, all analyses were conducted by subgroups (highCG, lowCG). Overall, no dyadic differences were found in the highCG group on the CCI scores. However, in the lowCG group, FCGs reported poorer Total ( p < .01), Communication ( p < .01), Navigation ( p < .01), and Operational ( p < .05) scores than patients. Provider setting (private practices) and the absence of an identified patient navigator significantly predicted poorer FCG Total scores compared to patients’ perceptions ( p < .05). FCGs’ Total scores were inversely associated with the degree of caregiver involvement among FCGs in the lowCG group ( p < .05) but not among FCGs in the highCG group. Conclusions: Our findings demonstrate that a subgroup of FCGs has poorer perceptions of CC that differ significantly from patient perceptions and is most apparent for patients receiving treatment in a private practice setting and in the absence of a patient navigator. These FCGs report a high degree of caregiver involvement and may be providing additional CC support that is not recognized by cancer patients. These findings underscore the need for interventions to support FCG CC involvement as a member of the care team in order to improve the quality and value of patient-centered cancer care delivery.

Identifying challenges to breast cancer care coordination at urban community-based primary care clinics.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 83-83
Author(s):  
Tamara Hamlish ◽  
Zakiya N Moton ◽  
Zuoli Zhang ◽  
Dana Sohmer ◽  
Olufunmilayo I. Olopade ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Primary Care ◽  
Care Coordination ◽  
Cancer Care ◽  
Medical Records ◽  
Primary Care Providers ◽  
Primary Care Visit ◽  
Patient Centered ◽  
Care Continuum ◽  
Cancer Specialists

83 Background: Primary care providers (PCPs) are well positioned to play a significant role in improving cancer care in the U.S. and achieving the Institute of Medicine (IOM) recommendation for patient-centered, coordinated, comprehensive cancer care across the care continuum. This is particularly important in underserved communities where fragmented care contributes to widening disparities in cancer mortality. However, PCPs can face considerable challenges delivering cancer care. This research examines challenges to breast cancer survivorship (BCS) care coordination at federally qualified health centers (FQHCs). Methods: We conducted a chart review at five Chicago FQHCs to assess BCS-related follow-up care provided by PCPs. We reviewed patient electronic medical records for documentation of breast cancer-related health information by the PCP and for documentation from cancer specialists, including consultant notes, pathology reports, and treatment histories. Based on BC ICD -9 codes we identified 109 patients who had a BC diagnosis within five years and a primary care visit at one of the five FQHCS within 2 years. Results: The patient population was primarily comprised of African Americans (81%), with 16% Hispanic, and 4% Asian or non-Hispanic White. Mean age at diagnosis was 55 years with 30% diagnosed < 50 years. Medicaid (59%) was the most common health insurance. More than half of the patients had ≥1 chronic disease. Critical clinical BC information was missing from patient medical records, including BC pathology (65%), mammogram (60%), last clinical breast examination (49%), and cancer specialist notes (45%). Documentation of family history and genetic counseling were missing from 76% and 98% of the records, respectively. Conclusions: Our data indicate that PCPs at FQHCs currently have a limited role in delivering IOM recommended patient-centered, coordinated, comprehensive cancer care across the care continuum. The research results underscore a need for improvement in two key areas: 1) support for PCPs to build capacity in BCS care and 2) enhanced communication and care coordination between cancer specialists and PCPS in order to make PCPs an active part of the BCS care team.

scholarly journals Internet-based technologies to improve cancer care coordination: Current use and attitudes among cancer patients

2015 ◽  
Vol 51 (4) ◽  
pp. 551-557 ◽  
Author(s):  
Anne Girault ◽  
Marie Ferrua ◽  
Benoît Lalloué ◽  
Claude Sicotte ◽  
Aude Fourcade ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Care Coordination ◽  
Cancer Care

Validation of an oncology-specific instrument to measure cancer patients’ perception of care coordination.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 6543-6543
Author(s):  
Izumi Okado ◽  
Kevin Cassel ◽  
Ian Pagano ◽  
Erin Fukaya ◽  
Timothy Kelleher ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Care Coordination ◽  
Cancer Care ◽  
Care Delivery ◽  
Care Transitions ◽  
Patient Navigator ◽  
Cancer Type ◽  
Practice Setting ◽  
Health Providers ◽  
Perceptions Of Care

6543 Background: According to the IOM, effective coordination of care (CC) is a critical component of high-quality cancer care; however, lack of a reliable and validated measure limits our current understanding of cancer care coordination. We examined psychometric properties and utility of a Care Coordination Instrument (CCI), a survey developed to assess cancer patients’ perceptions of care coordination. Methods: The 29-item CCI was administered to 200 patients receiving active treatment for cancer at private oncology practices and hospital-based facilities from Oct. 2018 to Jan. 2019. The CCI includes subscales that evaluate CC in 3 domains (Communication, Navigation, Operational) across 4 areas of CC (patient-physician; between health providers; during inpatient-to-ambulatory care transitions; during transitions across different phases of care). All items were rated on a 4-point Likert scale. Results: Psychometric analyses of the CCI demonstrated that it has good internal consistency reliability (α = .917) and the three-factor solution was an acceptable fit (CFI = .853, SRMR = .065). Overall, cancer types (leukemia, myeloma) and having an identified patient navigator significantly predicted higher patients’ ratings of CC ( p < .05). Similar trends were found for Communication and Operation subscale scores ( p < .05). Having an identified navigator predicted higher Navigation scores ( p < .05). Marginally significant differences were found for practice setting, with patients receiving care in hospital-based facilities reporting better CC ( p = .085). Item-level analyses revealed significant differences in specific aspects of CC (e.g., physician-patient communication) across cancer type, presence/absence of a patient navigator, and practice setting. Conclusions: The results demonstrate that the CCI is a reliable and valid instrument for measuring cancer patients’ perceptions of care coordination. Perception of CC correlated with the presence of a navigator, underlying cancer type and (trending) practice setting. Use of this instrument may reveal important information about cancer care coordination and may identify areas of targets for improvement in patient-centered cancer care delivery.

Mixed-methods research to evaluate a novel patient-centered cancer care coordination instrument.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 280-280
Author(s):  
Izumi Okado ◽  
Kevin Cassel ◽  
Ian Pagano ◽  
Randall F. Holcombe
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Cancer Patients ◽  
Care Coordination ◽  
Cancer Care ◽  
Mixed Methods Research ◽  
Patient Navigator ◽  
Focus Group Discussions ◽  
Patient Centered ◽  
Group Discussions

280 Background: Effective care coordination (CC) is a critical component of high-quality cancer care; however, efforts to improve cancer care coordination are hampered by limited patient-centered measures. This mixed-methods research reports on patients’ feedback and the utility of a novel care coordination instrument (CCI) designed to assess cancer care coordination. Methods: 7 focus group discussions were conducted with 68 cancer patients receiving active therapy to evaluate validity of the CCI. Subsequently, the CCI was modified and administered to additional 200 cancer patients derived from community-based private and hospital clinics. The CCI is a 29-item, multiple-choice questionnaire and includes subscales that evaluate CC in 3 domains (Communication, Navigation, Operational) across 4 areas of CC (patient-physician; between providers; during inpatient-to-ambulatory care transitions; during transitions across phases of care). Results: Qualitative analysis of focus group discussions demonstrated that the CCI has good face and content validity. Content analysis identified the following themes: Survey, Education/Knowledge, Navigator, Communication, Support, Access, Providers, and Team. Questions with unclear wording or high proportions of not applicable or missing responses were refined or removed. Results of the revised survey indicated that the CCI is able to distinguish patient- and practice characteristics associated with optimal/poor CC. Specifically, cancer types (leukemia, myeloma) and having a patient navigator predicted high overall patients’ ratings of CC ( p < .05). Marginally significant differences were found for practice setting ( p = .085). A multiple regression model with all predictors entered simultaneously revealed that the presence of a family/friend caregiver significantly predicted better CC ( p < .001); however, the benefits of a patient navigator were no longer significant. Conclusions: This study demonstrates the utility of the CCI for assessing patients’ perspectives of cancer CC. Use and integration of this instrument in oncology practices/clinics can identify areas of potential interventions for CC improvement and lead to a better quality of care.

Differences in rural versus urban cancer patients’ perception of care coordination.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 114-114
Author(s):  
Izumi Okado ◽  
Michelle Hashimoto ◽  
Randall F. Holcombe
Keyword(s):  
Cancer Patients ◽  
Care Coordination ◽  
Rural Areas ◽  
Cancer Care ◽  
Care Delivery ◽  
Self Report ◽  
Cancer Type ◽  
Rural And Urban ◽  
Perception Of Care ◽  
Rural Patients

114 Background: Although advances in anticancer treatment have improved survival of patients with cancer overall, cancer mortality rates remain disproportionately high in rural areas. Disparities in rural cancer health outcomes are partially attributed to challenges with care coordination in rural areas. However, little is known about rural-urban differences in patients’ perception of cancer care coordination. In this exploratory study, we compared rural and urban cancer patients’ perception of care coordination (CC) using a Care Coordination Instrument (CCI), a validated self-report measure. Methods: We conducted a secondary analysis of cross-sectional survey data from two community-based cancer care delivery studies from 2018 and 2019 focused on cancer patients’ perception of CC. Patients receiving active therapy for any cancer completed a 29-item CCI. The CCI assesses overall perceptions of CC (Total) and across 3 domains: Communication, Navigation, and Operational. The rural patient cohort was derived from the American Cancer Society Hope Lodge Hawaii, which provides lodging for patients from neighbor islands (rural) receiving cancer care on Oahu (urban). The urban comparison group included patients residing on Oahu. Multivariate regression analyses were conducted to compare rural and urban patients’ perception of CC with adjustment for age, gender, and cancer type. Results: Data from 243 patients were analyzed; 23 (9.5%) were rural and 220 (90.5%) were urban. The rural and urban groups were similar with respect to patient demographics (age, gender) and clinical status. Rural patients reported significantly lower overall mean CCI scores than urban patients (54.7 vs 61.6; p = .02). Rural-urban differences in patients’ perception of CC were found for Communication (29.5 vs 35.1; p = .004) and Operational (19.7 vs 22.0; p = .02) domains. There were no rural-urban differences for Navigation. Conclusions: Our results demonstrate that rural patients had significantly poorer perception of care coordination overall than urban patients. Specifically, the observed rural vs urban differences in patients’ perception of care coordination were related to communication and operational challenges. Required coordination with a patient navigator to facilitate access to Hope Lodge may have confounded analysis in the Navigation domain. These findings highlight the need for interventions to address communication and operational CC challenges for rural patients in order to improve the quality of cancer care and reduce health disparities for rural cancer patients.

The role of digital clinical measures in improving cancer care and research.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13584-e13584
Author(s):  
Jennifer Goldsack ◽  
Ariel Aguilo ◽  
Andrea Coravos ◽  
Chris Economos ◽  
Kate Lyden
Keyword(s):  
Best Practices ◽  
Cancer Care ◽  
Digital Health ◽  
Performance Status ◽  
Vital Signs ◽  
High Quality ◽  
Non Profit ◽  
Digital Medicine ◽  
Oncology Trial ◽  
Clinical Measures

e13584 Background: From objectively assessing performance status to recording simple vital signs, the adoption of high quality digital clinical measures offers enormous possibilities for transforming cancer care & research. However, the development & deployment of high quality digital measures in oncology lags behind adoption in other therapeutic areas. At the time of submission, the DiMe library of digital endpoints reports 166 unique digital endpoints being used in industry sponsored trials of new medical products, but none are being used in an oncology trial. There are seven digital clinical measures working their way through the FDA qualification program, but none in oncology. During the pandemic, care for patients with cardiac and other chronic conditions transitioned out of the clinic & into the home powered not only by virtual visits, but high quality information from remote monitoring. A study of oncology care facilities worldwide reported 89% finding difficulty in delivering usual care due to the challenges of safely bringing patients into the clinic during COVID. Methods: From March to Sep 2020, cross-industry stakeholders at the Digital Medicine Society (DiMe), Elektra Labs, Genentech, Koneksa, Myokardia, Sage Bionetworks, Scripps Research, and the US Food & Drug Administration came together to synthesize best practices from the digital health field, breaking down silos to create ‘ The Playbook’, the comprehensive and accessible “how-to” guide to support all stakeholders working to advance the safe, effective, ethical, and equitable use of digital clinical measures to improve lives. In October 2020, DiMe -- a 501c3 non-profit dedicated to advancing digital medicine to improve lives -- convenened a pre-competitive collaboration of 44 participants from 29 organizations to drive the adoption of the best practices articulated in The Playbook. Results: The Playbook describes trans-industry consensus for best practices for developing and deploying digital clinical measures across patient care, clinical research, and public health, including for oncology. Conclusions: The clinical, technical, and operational best practices necessary to develop and deploy high quality digital clinical measures into cancer care & research have been established. There is no reason for their successful adoption in oncology to lag behind other therapeutic areas. The Playbook and additional resources to support implementation due for launch on April 30 are critical tools for the field of oncology.

scholarly journals Digital Solutions for Cancer Survivorship Care (Preprint)

2018 ◽  
Author(s):  
Ingrid Oakley-Girvan ◽  
Sharon Watkins Davis ◽  
Michelle Longmire
Keyword(s):  
Health Care ◽  
Activities Of Daily Living ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Care Coordination ◽  
Cancer Care ◽  
Daily Living ◽  
Informal Caregivers ◽  
Survivorship Care ◽  
Care Providers

BACKGROUND Both the National Cancer Institute (NCI) and Institute of Medicine have stressed the importance of survivorship care plans (SCP) for cancer patients/survivors and discussed the significance and importance of required input from survivors and advocates. However, there are many barriers to cancer care coordination and the creation of SCPs, including oncology staff time required to write them. Although survivors valued SCPs and liked them, few survivors or caregivers report receiving survivorship information and in some studies, reported no receipt of an SCP. Digital platforms can support cancer survivorship care by integrating with the existing Electronic Health Record and presenting information in a dynamic and user-friendly format that improves coordination and communication. OBJECTIVE In this paper, we describe our involvement of stakeholders, including medical staff, patients/survivors and informal caregivers in developing a user-centered design for TOGETHERCARE, a smartphone app envisioned to provide critical functionality including planning and sharing of the SCP among survivors, physicians, and informal caregivers. METHODS Two interviewers conducted a total of nine semi-structured interviews, including a convenience sample of three health care providers who work with cancer patients, three cancer patients/survivors, and three informal caregivers currently caring for cancer patients/survivors. The interviews with Spanish-speaking patients/survivors and caregivers were conducted with a translator. Notes from the interviews were transcribed into a prepared template. The results were compiled and coded by two members of the core team. RESULTS We identified areas of consistency in responses between the three different groups in terms of how the application should work, as well as areas of difference. Additional suggestions for features for the application are also presented. Health care providers focused on the efficiency of using the application, features that would improve follow-up visits with patients and reduce the nursing triage, ER visits and readmissions. Survivors and caregivers were more focused on features that would provide assistance with patient appointment schedules, at-home medical tasks and activities of daily living. Although all three groups agreed that there is currently no systematic way for specialists to keep in touch with patients once they have moved to community care, and that SCPs would be useful, the practice of providing SCPs is rarely implemented. Survivors, caregivers, and providers all agreed that they have smartphones and that an app that includes the ability to communicate between the different groups, along with other features such as guidance on assisting with daily medical tasks and activities of daily living would be useful. CONCLUSIONS The pervasiveness of mobile devices and mobile app use provides an opportunity to make survivorship information and plans more readily available to caregivers and survivors, and to incorporate patient outcome reporting. Health care providers, cancer survivors, and informal caregivers all responded positively to a variety of features that could improve the efficiency of cancer care coordination and dynamic SCP provision.

How Valid are Patient Reports of Family History of Illness?

1980 ◽  
Vol 19 (03) ◽  
pp. 162-164 ◽  
Author(s):  
Rachel Harris ◽  
W. Margaret ◽  
Kathleen Hunter
Keyword(s):  
Family History ◽  
Medical History ◽  
Cancer Patients ◽  
Cause Of Death ◽  
Death Certificate ◽  
Recall Rate ◽  
Patient Reports ◽  
Small Subgroup ◽  
History Of ◽  
Medical Histories

The recall rate of patients’ family medical histories was studied in 200 cancer and non-cancer patients. Data on age and cause of death for parents and grandparents were collected. Although most patients knew the age and cause of death of parents, less than half knew for grandparents. Cancer patients had significantly greater recall for maternally related relatives. A subsample of patients’ family medical histories was compared to death certificate data. Patients’ reports were found to be highly inaccurate. Since only a small subgroup could provide medical history data for grandparents, the generaliz-ability for history of family illness is questioned.

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