scholarly journals Factors associated with willingness to share health information: A rapid review (Preprint)

2020 ◽  
Author(s):  
Iffat Naeem ◽  
Hude Quan ◽  
Shaminder Singh ◽  
Nashit Chowdhury ◽  
Mohammad Chowdhury ◽  
...  
Keyword(s):  
Electronic Health Records ◽  
Conceptual Framework ◽  
Information Sharing ◽  
Health Information ◽  
Information Exchange ◽  
Health Data ◽  
Rapid Review ◽  
Health Records ◽  
Factors Associated ◽  
Health Information Sharing

BACKGROUND In order to expand research and strategies to prevent disease, comprehensive and real time data is essential. Health data is increasingly available from platforms such as pharmaceuticals, genomics, healthcare imaging, medical procedures, wearable devices, and internet activity. Further, health data is integrated with an individual’s sociodemographic information, medical conditions, genetics, treatments, and healthcare. Ultimately, health information generation and flow are controlled by the patient or participant; however, there is a lack of understanding about the factors that influence willingness to share health information. A synthesis of current literature on the multifactorial nature of health information sharing preferences is required to understand health information exchange. OBJECTIVE The objectives of this review are to: 1) identify peer-reviewed literature that reported factors associated with health information sharing; 2) organize factors into cohesive themes, and present the synthesis in a conceptual framework of factors related to willingness to share health information. METHODS This review uses a rapid review methodology to gather literature regarding willingness to share health information within the context of eHealth, which includes electronic health records, personal health records, and mobile health information, general health information, or information on social determinants of health. Medline and Google Scholar was search using keywords such as “electronic health records” AND “data sharing” OR “sharing preference” OR “willingness to share”. The search was limited to any population that excluded healthcare workers or practitioners, and the participants aged 18 years or older within the USA or Canadian context. The data abstraction process utilizing thematic analysis where any factors associated with sharing health information were highlighted and coded inductively within each article. Based on shared meaning, the coded factors were collated into major themes. RESULTS Twenty-seven research articles met our inclusion criteria and were included in the qualitative analysis. The inductive thematic coding process revealed multiple major themes related to sharing health information. The themes informed a conceptual framework that outlines 3 domains associated with sharing health information from the patient or participant perspective: 1) sociodemographic factors; 2) cognitive factors; 3) contextual factors. CONCLUSIONS This review emphasized the importance of data generators' viewpoints and the complex systems of factors that shape their decision to share health information. The conceptual framework introduced in this report can be used as a tool to engage participants to develop effective information exchange partnerships. In the case of improving precision healthcare, addressing the factors presented here that influences willingness to share information can improve sharing capacity for individuals and allow researchers to re-orient their methods to address hesitation in sharing health information.

scholarly journals Health Consumers’ Daily Habit of Internet Banking Use as a Proxy for Understanding Health Information Sharing Behavior: Quasi-Experimental Approach (Preprint)

2019 ◽  
Author(s):  
Hyeyoung Hah
Keyword(s):  
Health Care ◽  
Information Sharing ◽  
Health Information ◽  
Information Management ◽  
Health Data ◽  
Financial Information ◽  
Web Based ◽  
Health Consumers ◽  
Health Information Sharing ◽  
Sharing Behavior

BACKGROUND As the US health care system is embracing data-driven care, personal health information (PHI) has become a valuable resource for various health care stakeholders. In particularly, health consumers are expected to autonomously manage and share PHI with their health care partners. To date, there have been mixed views on the factors influencing individuals’ health data–sharing behaviors. OBJECTIVE This study aimed to identify a key factor to better understand health information sharing behavior from a health consumer’s perspective. We focused on daily settings, wherein health data–sharing behavior becomes a part of individuals’ daily information management activities. Considering the similarity between health and finance information management, we explicitly examined whether health consumers’ daily habit of similar data sharing from the financial domain affects their PHI-sharing behaviors in various scenarios. METHODS A Web-based survey was administered to US health consumers who have access to and experience in using the internet. We collected individual health consumers’ intention to share PHI under varying contexts, habit of financial information management (operationalized as internet banking [IB] use in this paper), and the demographic information from the cross-sectional Web-based survey. To isolate the effect of daily IB on PHI-sharing behaviors in everyday contexts, propensity score matching was used to estimate the average treatment effect (ATE) and average treatment effect on the treated (ATET) regarding IB use. We balanced the treatment and control groups using caliper matching based on the observed confounding variables (ie, gender, income, health status, and access to primary care provider), all of which resulted in a minimal level of bias between unmatched and matched samples (bias &lt;5%). RESULTS A total of 339 responses were obtained from a cross-sectional Web-based survey. The ATET results showed that in terms of sharing contents, those who used IB daily were more likely to share general information (<italic>P</italic>=.01), current information (<italic>P</italic>=.003), and entire data (<italic>P</italic>=.04). Regarding occasions for sharing occasions, IB users were prone to share their information in all cases (<italic>P</italic>=.02). With regard to sharing recipients, daily IB users were more willing to share their personal health data with stakeholders who were not directly involved in their care, such as health administrators (<italic>P</italic>=.05). These results were qualitatively similar to the ATE results. CONCLUSIONS This study examined whether daily management of similar information (ie, personal financial information) changes health consumers’ PHI-sharing behavior under varying sharing conditions. We demonstrated that daily financial information management can encourage health information sharing to a much broader extent, in several instances, and with many stakeholders. We call for more attention to this unobserved daily habit driven by the use of various nonhealth technologies, all of which can implicitly affect patterns and the extent of individuals’ PHI-sharing behaviors.

scholarly journals The 21st Century Cures Act and electronic health records one year later: will patients see the benefits?

2018 ◽  
Vol 25 (9) ◽  
pp. 1218-1220 ◽  
Author(s):  
Carolyn T Lye ◽  
Howard P Forman ◽  
Jodi G Daniel ◽  
Harlan M Krumholz
Keyword(s):  
Information Technology ◽  
Electronic Health Records ◽  
Health Information ◽  
21St Century ◽  
Information Exchange ◽  
Health Information Exchange ◽  
Patient Access ◽  
Health Records ◽  
Electronic Health ◽  
21St Century Cures Act

Abstract While federal regulation provides patients the right to access their electronic health records and promotes increased use of health information technology, patient access to electronic health records remains limited. The 21st Century Cures Act, signed into law over a year ago, has important provisions that could significantly improve access and availability of health data. Specifically, the provisions call for partnerships among health information exchange networks, educational and research initiatives, and health information technology certification requirements that encourage interoperability. The article reviews the potential benefits and concerns regarding implementation of these provisions, particularly the difficulty of aligning incentives and requirements for data sharing and the question of whether currently proposed rules and guidance will support the goal of improved patient access and health information exchange. Researchers, clinicians, and patients have the power to advocate for improved patient access and interoperability as policy development and implementation of the 21st Century Cures Act continues.

scholarly journals Surveillance of Stillbirth and Syphilis Screening Using Electronic Health Records

2018 ◽  
Vol 10 (1) ◽  
Author(s):  
Brian E Dixon ◽  
Jane Wang ◽  
Timothy E O'Connor ◽  
Janet N Arno
Keyword(s):  
Public Health ◽  
Electronic Health Records ◽  
Health Information ◽  
Information Exchange ◽  
Health Information Exchange ◽  
Congenital Syphilis ◽  
The United States ◽  
Health Records ◽  
Syphilis Testing ◽  
Electronic Health

Objective: To measure stillbirth delivery rates and syphilis screening rates among women with a stillbirth delivery using electronic health record data available in a health information exchange.Introduction: Reports of infants born with congenital syphilis have increased in the United States every year since 2012. Prevention depends on high performing surveillance systems and compliance with the U.S. Centers for Disease Control and Prevention (CDC) recommendations to perform syphilis testing early in pregnancy, in the third trimester and at delivery if a woman is at high risk, and following a stillbirth delivery. These guidelines exist, because untreated syphilis is associated with adverse fetal outcomes including central nervous system infection and death.Surveillance of congenital syphilis and stillbirth is challenging because available data sources are limited. Assessment of compliance with testing guidelines is particularly challenging, since public health agencies often lack access to comprehensive cohorts of tested individuals as most public health laws only require reporting of positive disease case information.Methods: Using integrated electronic health records available in a community-based health information exchange, we examined syphilis testing patterns for women with a stillbirth delivery in Indiana between 2010-2016. The cohort was examined to determine whether the women received syphilis testing in accordance with the CDC recommendations. During this time period, Indiana recorded around 84,000 live births per year.Data were extracted from electronic health records, including encounter data, laboratory test results and procedure data, captured by the Indiana Network for Patient Care (INPC), one of the largest community-based HIE networks in the United States. The INPC connects over 90 health care facilities, including hospitals, physicians’ practices, pharmacy networks, long-term post-acute care facilities, laboratories, and radiology centers. In addition to clinical care, the INPC supports surveillance of STIs1.Women with a stillbirth delivery were identified using International Classification of Disease (ICD) Clinical Modification (CM) codes from the 9thand 10th editions (ICD-CM-9 and ICD-CM-10). Inclusion codes: ICD-CM-9 codes 656.4, 779.9, V27.1, V27.3, V27.4, V27.6, V27.7, V32.01, V32.1, V32.2, V36.1; and ICD-CM-10 codes P95, P96.9, O36.4, Z37.1, Z37.3, Z37.4, Z37.9.Using the master person index for the INPC, we linked stillbirth deliveries with pregnancy encounters and laboratory testing data. We analyzed documentation of syphilis testing during the pregnancy (up to 270 days prior to the stillbirth delivery) as well as after the stillbirth delivery (up to 30 days). Broad time ranges were utilized to account for potential delays in reporting of either the stillbirth delivery or the syphilis test results. Documentation could include either presence of a result from a laboratory test for syphilis or a CPT code (80055, 86780, 86781, 86592, 86593) indicating performance of a syphilis test.Results: A total of 4,361 stillbirth deliveries attributable to 4,265 unique women were identified in the INPC between 2010-2016; representing a rate of 7.44 stillbirths per 1,000 live births during the same time period. Of the stillbirth deliveries, syphilis testing occurred within 270 days prior to or 30 days after delivery for 2,763 (63.4%) cases. Figure 1 displays the number of stillbirth cases observed each year and the number of cases in which syphilis testing occurred during the pregnancy or after delivery.Conclusions: Using integrated electronic health records data, we discovered that fetal deaths occurred more frequently (7.44 versus 4.09 per 1,000) than previously estimated2 through fetal death reporting mechanisms in Indiana. Furthermore, we observed increasing rates of stillbirth within Indiana in recent years. Integrated data further enabled measurement of syphilis testing rates for stillbirth cases, which were similar to those reported by Patel et al.3using a large, national administrative data set. Testing rates in Indiana are well below the targets set by national and international public health organizations. Accessing more complete data on populations using a health information exchange is valuable, although doing so may uncover a more negative picture of health in one’s community. Deeper analysis of these trends is warranted to explore factors related to increasing rates as well as limited testing in this population.

scholarly journals Improving information retrieval from electronic health records using dynamic and multi-collaborative filtering

PLoS ONE ◽  
2021 ◽  
Vol 16 (8) ◽  
pp. e0255467
Author(s):  
Xia Ning ◽  
Ziwei Fan ◽  
Evan Burgun ◽  
Zhiyun Ren ◽  
Titus Schleyer
Keyword(s):  
Information Retrieval ◽  
Electronic Health Records ◽  
Markov Model ◽  
Collaborative Filtering ◽  
Health Information ◽  
Information Exchange ◽  
New Method ◽  
Electronic Health Record Data ◽  
Health Records ◽  
Electronic Health

Due to the rapid growth of information available about individual patients, most physicians suffer from information overload and inefficiencies when they review patient information in health information technology systems. In this paper, we present a novel hybrid dynamic and multi-collaborative filtering method to improve information retrieval from electronic health records. This method recommends relevant information from electronic health records to physicians during patient visits. It models information search dynamics using a Markov model. It also leverages the key idea of collaborative filtering, originating from Recommender Systems, for prioritizing information based on various similarities among physicians, patients and information items. We tested this new method using electronic health record data from the Indiana Network for Patient Care, a large, inter-organizational clinical data repository maintained by the Indiana Health Information Exchange. Our experimental results demonstrated that, for top-5 recommendations, our method was able to correctly predict the information in which physicians were interested in 46.7% of all test cases. For top-1 recommendations, the corresponding figure was 24.7%. In addition, the new method was 22.3% better than the conventional Markov model for top-1 recommendations.

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