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.

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.

scholarly journals Digital Medicine Community Perspectives and Challenges: Survey Study (Preprint)

2020 ◽  
Author(s):  
Brinnae Bent ◽  
Ida Sim ◽  
Jessilyn P Dunn
Keyword(s):  
Best Practices ◽  
Work Experience ◽  
Digital Health ◽  
Primary Objective ◽  
Survey Study ◽  
Medicine Research ◽  
Standard Data ◽  
Educational Backgrounds ◽  
Digital Medicine ◽  
Medicine Community

BACKGROUND The field of digital medicine has seen rapid growth over the past decade. With this unfettered growth, challenges surrounding interoperability have emerged as a critical barrier to translating digital medicine into practice. In order to understand how to mitigate challenges in digital medicine research and practice, this community must understand the landscape of digital medicine professionals, which digital medicine tools are being used and how, and user perspectives on current challenges in the field of digital medicine. OBJECTIVE The primary objective of this study is to provide information to the digital medicine community that is working to establish frameworks and best practices for interoperability in digital medicine. We sought to learn about the background of digital medicine professionals and determine which sensors and file types are being used most commonly in digital medicine research. We also sought to understand perspectives on digital medicine interoperability. METHODS We used a web-based survey to query a total of 56 digital medicine professionals from May 1, 2020, to July 10, 2020, on their educational and work experience, the sensors, file types, and toolkits they use professionally, and their perspectives on interoperability in digital medicine. RESULTS We determined that the digital medicine community comes from diverse educational backgrounds and uses a variety of sensors and file types. Sensors measuring physical activity and the cardiovascular system are the most frequently used, and smartphones continue to be the dominant source of digital health information collection in the digital medicine community. We show that there is not a general consensus on file types in digital medicine, and data are currently handled in multiple ways. There is consensus that interoperability is a critical impediment in digital medicine, with 93% (52) of survey respondents in agreement. However, only 36% (20) of respondents currently use tools for interoperability in digital medicine. We identified three key interoperability needs to be met: integration with electronic health records, implementation of standard data schemas, and standard and verifiable methods for digital medicine research. We show that digital medicine professionals are eager to adopt new tools to solve interoperability problems, and we suggest tools to support digital medicine interoperability. CONCLUSIONS Understanding the digital medicine community, the sensors and file types they use, and their perspectives on interoperability will enable the development and implementation of solutions that fill critical interoperability gaps in digital medicine. The challenges to interoperability outlined by this study will drive the next steps in creating an interoperable digital medicine community. Establishing best practices to address these challenges and employing platforms for digital medicine interoperability will be essential to furthering the field of digital medicine.

scholarly journals Digital Medicine Community Perspectives and Challenges: Survey Study

10.2196/24570 ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. e24570
Author(s):  
Brinnae Bent ◽  
Ida Sim ◽  
Jessilyn P Dunn
Keyword(s):  
Best Practices ◽  
Work Experience ◽  
Digital Health ◽  
Primary Objective ◽  
Survey Study ◽  
Medicine Research ◽  
Standard Data ◽  
Educational Backgrounds ◽  
Digital Medicine ◽  
Medicine Community

Background The field of digital medicine has seen rapid growth over the past decade. With this unfettered growth, challenges surrounding interoperability have emerged as a critical barrier to translating digital medicine into practice. In order to understand how to mitigate challenges in digital medicine research and practice, this community must understand the landscape of digital medicine professionals, which digital medicine tools are being used and how, and user perspectives on current challenges in the field of digital medicine. Objective The primary objective of this study is to provide information to the digital medicine community that is working to establish frameworks and best practices for interoperability in digital medicine. We sought to learn about the background of digital medicine professionals and determine which sensors and file types are being used most commonly in digital medicine research. We also sought to understand perspectives on digital medicine interoperability. Methods We used a web-based survey to query a total of 56 digital medicine professionals from May 1, 2020, to July 10, 2020, on their educational and work experience, the sensors, file types, and toolkits they use professionally, and their perspectives on interoperability in digital medicine. Results We determined that the digital medicine community comes from diverse educational backgrounds and uses a variety of sensors and file types. Sensors measuring physical activity and the cardiovascular system are the most frequently used, and smartphones continue to be the dominant source of digital health information collection in the digital medicine community. We show that there is not a general consensus on file types in digital medicine, and data are currently handled in multiple ways. There is consensus that interoperability is a critical impediment in digital medicine, with 93% (52) of survey respondents in agreement. However, only 36% (20) of respondents currently use tools for interoperability in digital medicine. We identified three key interoperability needs to be met: integration with electronic health records, implementation of standard data schemas, and standard and verifiable methods for digital medicine research. We show that digital medicine professionals are eager to adopt new tools to solve interoperability problems, and we suggest tools to support digital medicine interoperability. Conclusions Understanding the digital medicine community, the sensors and file types they use, and their perspectives on interoperability will enable the development and implementation of solutions that fill critical interoperability gaps in digital medicine. The challenges to interoperability outlined by this study will drive the next steps in creating an interoperable digital medicine community. Establishing best practices to address these challenges and employing platforms for digital medicine interoperability will be essential to furthering the field of digital medicine.

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.

Here there Be Tygers: Profit, Non-profit, and Loss in the Age of Disintermediation

1997 ◽  
Vol 22 (3) ◽  
Author(s):  
Michael Jensen
Keyword(s):  
Eastern Europe ◽  
Social Institutions ◽  
Scholarly Publishing ◽  
The Political ◽  
Quality Information ◽  
High Quality ◽  
Non Profit ◽  
High Quality Information ◽  
Europe De L’Est ◽  
The Impact

Abstract: Scholarly publishing and access to high-quality information may in fact be threatened, rather than improved, by the revolution in communications, particularly in a fully commercial Internet. The effects of the political revolution in Eastern Europe on scholarship and quality publishing are used as a touchstone of the dangers that occur when naïve revolutionaries make swift changes without fully recognizing the impact upon delicately balanced social institutions such as non-profit organizations. Résumé: La révolution en communications, particulièrement en ce qui regarde un Internet commercialisé, plutôt que d'améliorer l'édition savante et l'accès à de l'information de haute qualité, pourrait en fait poser une menace pour ceux-ci. Cet article examine comment la révolution politique en Europe de l'Est a influé sur la recherche et l'édition de qualité. Il utilise cet exemple pour examiner les dangers que peuvent courir certains révolutionnaires naïfs quand ils instaurent des changements rapides san songer à leur impact sur des institutions sociales à équilibre délicat comme les organisations à but non lucratif.

scholarly journals Evaluating Barriers and Opportunities in Delivering High-Quality Oncology Care in a Resource-Limited Setting Using a Comprehensive Needs Assessment Tool

2018 ◽  
pp. 1-9
Author(s):  
Chika R. Nwachukwu ◽  
Omobola Mudasiru ◽  
Lynn Million ◽  
Shruti Sheth ◽  
Hope Qamoos ◽  
...  
Keyword(s):  
Palliative Care ◽  
Needs Assessment ◽  
Cancer Care ◽  
Assessment Tool ◽  
Hospital Staff ◽  
Teaching Hospitals ◽  
High Quality ◽  
Middle Income ◽  
Quality Cancer Care ◽  
Oncology Care

Purpose Despite recognition of both the growing cancer burden in low- and middle-income countries and the disproportionately high mortality rates in these settings, delivery of high-quality cancer care remains a challenge. The disparities in cancer care outcomes for many geographic regions result from barriers that are likely complex and understudied. This study describes the development and use of a streamlined needs assessment questionnaire (NAQ) to understand the barriers to providing quality cancer care, identifies areas for improvement, and formulates recommendations for implementation. Methods Using a comprehensive NAQ, in-depth interviews were conducted with 17 hospital staff involved in cancer care at two teaching hospitals in Nigeria. Data were analyzed using content analysis and organized into a framework with preset codes and emergent codes, where applicable. Results Data from the interviews were organized into six broad themes: staff, stuff, system, space, lack of palliative care, and provider bias, with key barriers within themes including: financial, infrastructural, lack of awareness, limited human capacity resources, lack of palliative care, and provider perspective on patient-related barriers to cancer care. Specific solutions based on ability to reasonably implement were subcategorized into short-, medium-, and long-term goals. Conclusion This study provides a framework for a streamlined initial needs assessment and a unique discussion on the barriers to high-quality oncology care that are prevalent in resource-constrained settings. We report the feasibility of collecting and organizing data using a streamlined NAQ and provide a thorough and in-depth understanding of the challenges in this setting. Knowledge gained from the assessments will inform steps to improve oncology cancer in these settings.

scholarly journals Technique of pressurized intrathoracic aerosol chemotherapy (PITAC) for malignant pleural effusion

2020 ◽  
Vol 5 (4) ◽  
Author(s):  
Gabrielle Drevet ◽  
Jean-Michel Maury ◽  
Naoual Bakrin ◽  
François Tronc
Keyword(s):  
Pleural Effusion ◽  
Malignant Pleural Effusion ◽  
Performance Status ◽  
Vital Signs ◽  
Bronchial Tube ◽  
Intrathoracic Pressure ◽  
Intercostal Space ◽  
Novel Therapy ◽  
Apical Position ◽  
Surgical Smoke

AbstractObjectivesMalignant pleural effusion (MPE) is a devastating evolution of several malignancies. Pressurized intrathoracic aerosol chemotherapy (PITAC) might be a novel therapy option in MPE.MethodsPITAC is considered for patients with MPE with a performance status <2 and without other metastatic sites. General anesthesia is administered and a double-lumen bronchial tube is inserted. The patient is placed in a lateral decubitus position, and the operation is performed after ipsilateral lung exclusion. Two 12-mm balloon trocars are inserted—one in the seventh intercostal space in the mid-axillary line and one in the fifth intercostal space in the anterior axillary line. Extent of pleural disease and volume of MPE are documented. MPE is removed and parietal pleural biopsy are performed. An intrathoracic pressure of 12 mmHg CO2 is established, and a combination of Cisplatin (10.5 mg/m2 in a total volume of 150 cc NaCl 0.9%) and Doxorubicin (2.1 mg/m2 in a total volume of 50 cc NaCl 0.9%) are aerosolized via nebulizer in the pleural cavity. Vital signs and nebulization are remote-controlled. After 30 min, the remaining toxic aerosol is exhausted using a closed surgical smoke evacuation system. A 24Fr chest tube is inserted in postero-apical position with continuous negative pressure of 20 cm H2O. When needed, PITAC may be repeated every six weeks in alternate with systemic chemotherapy.ResultsIn our hands, the technique above has shown to be feasible and safe.ConclusionsFurther studies are needed to assess the potential symptomatic and oncological benefits of PITAC in MPE.

State of the Journal, 2021

2021 ◽  
Vol 75 (6) ◽  
Author(s):  
Stacey Reynolds
Keyword(s):  
North America ◽  
Occupational Therapy ◽  
Best Practices ◽  
Manuscript Submission ◽  
High Quality ◽  
High Quality Research ◽  
Quality Research

The American Journal of Occupational Therapy (AJOT) retains its ranking as the top-rated occupational therapy journal in North America by maintaining its commitment to publishing high-quality research aimed at occupational therapy professionals. As the needs and scope of the profession continue to expand, AJOT will continue to serve as a resource to practitioners, academics, and administrators to help guide best practices. Communication and engagement with readers will be facilitated through the new AJOT website as well as the new AJOT: Authors and Issues series. The journal seeks to expand its scope through its website, manuscript submission platform, and new ways to engage readers.

Understanding the complementary nature of paid and volunteer crowds for content creation

2020 ◽  
pp. 37
Author(s):  
Claudia Flores-Saviaga ◽  
Ricardo Granados ◽  
Liliana Savage ◽  
Lizbeth Escobedo ◽  
Saiph Savage
Keyword(s):  
Real World ◽  
Limited Resource ◽  
Cost Effective ◽  
High Quality ◽  
Power Cost ◽  
Non Profit ◽  
Content Creation ◽  
Online Study ◽  
Complementary Nature ◽  
Different Populations

Crowdsourced content creation like articles or slogans can be powered by crowds of volunteers or workers from paid task markets. Volunteers often have expertise and are intrinsically motivated, but are a limited resource, and are not always reliably available. On the other hand, paid crowd workers are reliably available, can be guided to produce high-quality content, but cost money. How can these different populations of crowd workers be leveraged together to power cost-effective yet high-quality crowd-powered content-creation systems? To answer this question, we need to understand the strengths and weaknesses of each. We conducted an online study where we hired paid crowd workers and recruited volunteers from social media to complete three content creation tasks for three real-world non-profit organizations that focus on empowering women. These tasks ranged in complexity from simply generating keywords or slogans to creating a draft biographical article. Our results show that paid crowds completed work and structured content following editorial guidelines more effectively. However, volunteer crowds provide content that is more original. Based on the findings, we suggest that crowd-powered content-creation systems could gain the best of both worlds by leveraging volunteers to scaffold the direction that original content should take; while having paid crowd workers structure content and prepare it for real world use.

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