scholarly journals Pursuing Data Modernization in Cancer Surveillance by Developing a Cloud-Based Computing Platform: Real-Time Cancer Case Collection

2021 ◽  
pp. 24-29
Author(s):  
David E. Jones ◽  
Temitope O. Alimi ◽  
Paran Pordell ◽  
Florence K. Tangka ◽  
Wendy Blumenthal ◽  
...  

Cancer surveillance is a field focused on collection of data to evaluate the burden of cancer and apply public health strategies to prevent and control cancer in the community. A key challenge facing the cancer surveillance community is the number of manual tasks required to collect cancer surveillance data, thereby resulting in possible delays in analysis and use of the information. To modernize and automate cancer data collection and reporting, the Centers for Disease Control and Prevention is planning, developing, and piloting a cancer surveillance cloud-based computing platform (CS-CBCP) with standardized electronic reporting from laboratories and health-care providers. With this system, automation of the cancer case collection process and access to real-time cancer case data can be achieved, which could not be done before. Furthermore, the COVID-19 pandemic has illustrated the importance of continuity of operations plans, and the CS-CBCP has the potential to provide such a platform suitable for remote operations of central cancer registries.

2018 ◽  
Vol 5 (12) ◽  
Author(s):  
Paul A Christensen ◽  
Randall J Olsen ◽  
Katherine K Perez ◽  
Patricia L Cernoch ◽  
S Wesley Long

Abstract We implemented a real-time report to distribute respiratory pathogen data for our 8-hospital system to anyone with an Internet connection and a web browser. Real-time access to accurate regional laboratory observation data during an epidemic influenza season can guide diagnostic and therapeutic strategies.


2021 ◽  
pp. 288-294
Author(s):  
Paul Wormeli ◽  
Jenna Mazreku ◽  
Jeremy Pine ◽  
Mark Damesyn

For central cancer registries to become a more significant public health resource, they must evolve to capture more timely, accurate, and extensive data. Key stakeholders have called for a faster time to deliver work products, data extensions such as social determinants of health, and more relevant information for cancer control programs at the local level. The proposed model consists of near real-time reporting stages to replace the current time and labor-intensive efforts to populate a complete cancer case abstract on the basis of the 12- and 24-month data submission timelines. The first stage collects a cancer diagnosis minimum data set sufficient to describe population incidence and prevalence, which is then followed by a second stage capturing subsequent case updates and treatment data. A third stage procures targeted information in response to identified research projects' needs. The model also provides for further supplemental reports as may be defined to gather additional data. All stages leverage electronic health records' widespread development and the many emerging standards for data content, including national policies related to healthcare and technical standards for interoperability, such as the Fast Healthcare Interoperability Resources specifications to automate and accelerate reporting to central cancer registries. The emergence of application programming interfaces that allow for more interoperability among systems would be leveraged, leading to more efficient information sharing. Adopting this model will expedite cancer data availability to improve cancer control while supporting data integrity and flexibility in data items. It presents a long-term and feasible solution that addresses the extensive burden and unsustainable manual data collection requirements placed on Certified Tumor Registrars at disease reporting entities nationally.


2020 ◽  
Vol 2020 ◽  
pp. 1-10 ◽  
Author(s):  
Susan Kamal ◽  
Marc I. Rosen ◽  
Christina Lazar ◽  
Lisa Siqueiros ◽  
Yan Wang ◽  
...  

Objective. To describe and analyze the perception and attitudes of people living with HIV (PLWH) and HIV HCPs towards medication adherence with a focus on a digital medicine program (DMP) with ingestible sensors (ISs). Methods. This is a qualitative analysis pilot study of PLWH who were using DMP recruited by purposive sampling. A convenience sample of HCPs was interviewed. Semistructured interviews were conducted, and thematic analysis was performed. Results. Fifteen PLWH were interviewed, and thematic analysis resulted in three main themes: self-identified medication adherence patterns, experiences with the DMP, and recommending the DMP to others. Six health care providers (HCPs) described barriers and facilitators to adherence, as well as advantages and disadvantages of using or recommending the DMP to PLWH. Conclusion. This study evaluated participant and provider responses to DMP, which is a novel technology for real-time measuring and monitoring adherence with the IS. Participant and provider responses were mixed, highlighting both the advantages and limitations of the technology. Practice Implications. Taking PLWH experiences into consideration will enhance the development of this and other useful tools that clinicians and researchers can use for enhanced patient care.


10.2196/14347 ◽  
2019 ◽  
Vol 21 (9) ◽  
pp. e14347
Author(s):  
Gudbjörg Erlingsdóttir ◽  
Lena Petersson ◽  
Karin Jonnergård

Background The New Public Management movement strove for transparency so that policy makers and citizens could gain insight into the work and performance of health care. As the use of the electronic health record (EHR) started to diffuse, a foundation was laid for enhanced transparency within and between health care organizations. Now we appear to be experiencing a new kind of transparency in the health care sector. Many health care providers offer their patients online access to their EHRs (here referred to as Open Notes). The Open Notes system enables and strives for transparency between the health care organization and the patient. Hence, this study investigates health care professional (HCP) perceptions of Open Notes and deepens the understanding of the transparency that Open Notes implies. Objective Based on two survey studies of HCP perceptions of Open Notes, this paper aims to deepen the academic writing on the type of transparency that is connected to Open Notes. Methods HCPs in adult psychiatry in Region Skåne, Sweden, were surveyed before and after implementation of Open Notes. The empirical material presented consists of 1554 free-text answers from two Web surveys. A qualitative content analysis was performed. Results The theoretically informed analysis pivots around the following factors connected to transparency: effectiveness; trust; accountability; autonomy and control; confidentiality, privacy, and anonymity; fairness; and legitimacy. The results show that free-text answers can be sorted under these factors as trade-offs with transparency. According to HCPs, trade-offs affect their work, their relationship with patients, and not least, their work tool, the EHR. However, since many HCPs also state that they have not met many patients, and in some cases none, who have read their EHRs, these effects seem to be more connected to the possibility (or threat) of transparency than to the actual effectuated transparency. Conclusions The implementation (or reform) of Open Notes is policy driven while demanding real-time transparency on behalf of citizens/patients and not the authorities, which makes this particular form of transparency quite unique and interesting. We have chosen to call it governed individual real-time transparency. The effects of Open Notes may vary between different medical specialties relative to their sensitivity to both total and real-time transparency. When HCPs react by changing their ways of writing notes, Open Notes can affect the efficiency of the work of HCPs and the service itself in a negative manner. HCP reactions are aimed primarily at protecting patients and their relatives as well as their own relationship with the patients and secondly at protecting themselves. Thus, governed individual real-time transparency that provides full transparency of an actual practice in health care may have the intended positive effects but can also result in negative trade-offs between transparency and efficiency of the actual practice. This may imply that full transparency is not always most desirable but that other options can be considered on a scale between none and full transparency.


Author(s):  
Mohamed Lambarki ◽  
Jori Kern ◽  
David Croft ◽  
Cäcilia Engels ◽  
Noemi Deppenwiese ◽  
...  

In the field of oncology, a close integration of cancer research and patient care is indispensable. Although an exchange of data between health care providers and other institutions such as cancer registries has already been established in Germany, it does not take advantage of internationally coordinated health data standards. Translational cancer research would also benefit from such standards in the context of secondary data use. This paper employs use cases from the German Cancer Consortium (DKTK) to show how this gap can be closed using a harmonised FHIR-based data model, and how to apply it to an existing federated data platform.


Author(s):  
Kira Scheel ◽  
Thomas Franke ◽  
Alisha Weikert ◽  
Melanie Dick ◽  
Anna Walter ◽  
...  

In cancer registries, record linkage procedures are used to link records of the same patient from different health care providers. In the Clinical Cancer Registry of Lower Saxony, a multi-level combination of exact assignment using the statutory health insurance number and a probabilistic procedure with control numbers and address data is applied. The procedure implemented in the register application assigns the incoming messages in this way as far as possible automatically. The aim of the observation carried out was to check the efficiency of the match variables and threshold values used, above which manual assignment is required. Weak points were identified and approaches to solutions were developed.


2021 ◽  
Vol 109 (4) ◽  
Author(s):  
Laura Menard ◽  
Chelsea Misquith

Background: Project ECHO (Extension for Community Healthcare Outcomes) is a telehealth initiative that aims to reduce disparities in delivery of health care by leveraging technology and local expertise to provide guidance on specialized subjects to health care providers across the world. In 2018, a new ECHO hub convened in Indianapolis with a focus on health care for individuals in the lesbian, gay, bisexual, trans, and queer (LGBTQ+) populations. This ECHO iteration was one of the first of its kind and would soon be followed by a new human immunodeficiency virus (HIV) ECHO as well.Case Presentation: In a novel approach, information professionals participated in the early planning stages of the formation of these ECHO teams, which enabled the provision of real-time medical evidence and resources at the point-of-need once the teams were launched. This case study demonstrates proof of concept for including health sciences librarians and/or information professionals in the ECHO as hub team members. In this case study, the authors describe and quantify the value added to the HIV and LGBTQ+ ECHO sessions by the medical librarians, as well as provide a template for how other telehealth initiatives can collaborate with their local health information professionals.Conclusions: Librarian involvement in Project ECHO over the past three years has been enthusiastically received. The librarians have contributed hundreds of resources to ECHO participants, helped build and curate resource repositories, and expanded the embedded librarian program to an additional two ECHO iterations. ECHO hub team members report high rates of satisfaction with the performance of embedded librarians and appreciate the provision of point-of-need evidence to ECHO participants.


2020 ◽  
Author(s):  
Sabrina Summer ◽  
Ralf Schmidt ◽  
Anna Nele Herdina ◽  
Isabella Krickl ◽  
Julia Madner ◽  
...  

AbstractWith global demand for SARS-CoV-2 testing ever rising, shortages in commercially available viral transport media pose a serious problem for laboratories and health care providers. For reliable diagnosis of SARS-CoV-2 and other respiratory viruses, executed by Real-time PCR, the quality of respiratory specimens, predominantly determined by transport and storage conditions, is crucial. Therefore, our aim was to explore the reliability of minimal transport media, comprising saline and the CDC recommended Viral Transport Media (HBSS VTM), for the diagnosis of SARS-CoV-2 and other respiratory viruses (influenza A, respiratory syncytial virus, adenovirus, rhinovirus and human metapneumovirus) compared to commercial products, such as the Universal Transport Media (UTM). We question the assumptions, that the choice of medium and temperature for storage and transport affect the accuracy of viral detection by RT-PCR. Both alternatives to the commercial transport medium (UTM), namely the CDC viral transport media (HBSS VTM) and saline, allow adequate detection of SARS-CoV-2 and other respiratory viruses, regardless of the storage temperature and time.Our study revealed the high resilience of SARS-CoV-2 and other respiratory viruses, enabling proper detection in clinical specimens even after long-time storage at high temperatures, independent of the transport medium’s composition.


2020 ◽  
Author(s):  
Jennifer Dickman Portz ◽  
Kelsey Lynett Ford ◽  
Kira Elsbernd ◽  
Christopher E Knoepke ◽  
Kelsey Flint ◽  
...  

BACKGROUND Many mobile health (mHealth) technologies exist for patients with heart failure (HF). However, HF mhealth lacks evidence of efficacy, caregiver involvement, and clinically useful real-time data. OBJECTIVE We aim to capture health care providers’ perceived value of HF mHealth, particularly for pairing patient–caregiver-generated data with clinical intervention to inform the design of future HF mHealth. METHODS This study is a subanalysis of a larger qualitative study based on interviewing patients with HF, their caregivers, and health care providers. This analysis included interviews with health care providers (N=20), focusing on their perceived usefulness of HF mHealth tools and interventions. RESULTS A total of 5 themes emerged: (1) bio-psychosocial-spiritual monitoring, (2) use of sensors, (3) interoperability, (4) data sharing, and (5) usefulness of patient-reported outcomes in practice. Providers remain interested in mHealth technologies for HF patients and their caregivers. However, providers report being unconvinced of the clinical usefulness of robust real-time patient-reported outcomes. CONCLUSIONS The use of assessments, sensors, and real-time data collection could provide value in patient care. Future research must continually explore how to maximize the utility of mHealth for HF patients, their caregivers, and health care providers.


2019 ◽  
Vol 31 (2) ◽  
pp. 111-115

A quality-cancer registry plays an unique role in planning, evaluation of cancer control program, treatment, and palliative care. To date, there is a paucity of studies in Myanmar that have focused on the implementation of a population-based cancer registry. The concept of combing telemedicine to this implementation may be beneficial to those working at the grass-roots level for the overall improvement of the processes of community reporting, effective referral for cancer care, and the establishment of cancer registries. A pilot study was therefore carried out to formulate the strategic approach for establishing a population-based cancer registry in Hlegu Township in Northern Yangon District. First, the cancer data entry software was created and installed on mobile phones as an information technology tool to initialize telemedicine. Then, 15 Health Assistants (HA) in Hlegu Township were trained for data collection to get basic information on cancer-confimed patients using mobile phone applications followed by online-based reporting to the cancer database unit. A total of 126 patients with cancer were registered from June 2016 to May 2017. The estimated prevalence of disease is 4.6 per 10,000 people. The most common age group at cancer diagnosis was 46 to 65 years (73.58%). Among 91 registered female patients with cancer, the three most common cancers were breast (25.39%), cervix (12.69%) and uterine (11.9%). Eighty-five patients with cancer (67.46%) received their diagnosis in public hospitals. Overall, 59% of patients received combination treatment, 19% received surgery only, 16% were treated with traditional medicine, 3% were treated with radiotherapy only, and 3% were treated with chemotherapy only. This study is the first of its kind, combing the concept of telemedicine to the creation of a population-based cancer registry. A complete and true picture of the cancer burden in the studied population can be provided without using enormous resources. This strategic approach is most appropriate to collect information of every cancer case in resource limited setting like Myanmar.


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