scholarly journals Exploring the potential of online self-reported and routinely collected electronic healthcare record data in self-harm research

2020 ◽  
Author(s):  
◽  
Amanda Marchant

Background:Self-harm is a major public health concern and is a leading cause of death from injury. Reaching participants for self-harm research raises a number of challenges, however an opportunity exists in the use of both the internet for data collection and in the use of routinely collected healthcare data.Aims and objectives:The aim of this project was to explore the potential of both online and routinely collected healthcare data for self-harm research and the way in which these data sources can be brought together.Methods:This thesis represents a series of projects exploring the use of various data sources for self-harm research. The first was the development and piloting of an online platform (SHARE UK) for self-harm research. This website incorporated multiple functions: hosting questionnaires; sign-up for a research register; sign-up for linkage with routinely collected data and uploads to a media databank. Next a national survey was conducted to explore young people’s perspectives on the use of both online and healthcare data for self-harm research. Lastly a population level electronic health record cohort study analysing trends over time and contacts across healthcare services was conducted.Results:Participants engaged well with research online: 498 participants signed up to the SHARE UK platform; of whom 85% signed up for the research register. Sixty-two participants uploaded 95 items to the media databank. Alternative formats are discussed. Only 15% of participants consented for linkage with healthcare data. A total of 2,733 young people aged 10-24 who self-harm completed the national survey. Results demonstrated that the necessity for participants to give their address for linkage poses a significant barrier. Opinions around the use of Big Data, encompassing social media, marketing and health data are explored.A total of 937,697 individuals aged 10-24 provided 5,269,794 person years of data from 01.01.2003 to 20.09.2015 to the electronic health record cohort study. Self-harm incidence was highest in primary care. Males preferentially present to emergency departments. Male are less likely than females to be admitted following attendance. This difference persists in the youngest age groups and for self-poisoning. Analysis supports the importance of non-specialist services.Conclusions:This thesis has explored both online and routinely collected healthcare data and their utility for self-harm research, exploring participant views and issues via a national survey. An online platform for self-harm research was successfully piloted and issues identified. This series of projects explores possibilities for future self-harm research. The use of multiple data sources allows research to represent both those in the community and those presenting to healthcare settings, lowering many of the barriers to participating in self-harm research. The future utility of the SHARE UK platform through its collaboration with the Adolescent Mental Health Data Platform (ADP) is discussed. Results of this series of projects will be used to inform the development of this platform with lessons learnt from the pilot addressed and findings from both the national survey and the electronic health record cohort study informing and shaping future research.

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037405
Author(s):  
Daniel Dedman ◽  
Melissa Cabecinha ◽  
Rachael Williams ◽  
Stephen J W Evans ◽  
Krishnan Bhaskaran ◽  
...  

ObjectiveTo identify observational studies which used data from more than one primary care electronic health record (EHR) database, and summarise key characteristics including: objective and rationale for using multiple data sources; methods used to manage, analyse and (where applicable) combine data; and approaches used to assess and report heterogeneity between data sources.DesignA systematic review of published studies.Data sourcesPubmed and Embase databases were searched using list of named primary care EHR databases; supplementary hand searches of reference list of studies were retained after initial screening.Study selectionObservational studies published between January 2000 and May 2018 were selected, which included at least two different primary care EHR databases.Results6054 studies were identified from database and hand searches, and 109 were included in the final review, the majority published between 2014 and 2018. Included studies used 38 different primary care EHR data sources. Forty-seven studies (44%) were descriptive or methodological. Of 62 analytical studies, 22 (36%) presented separate results from each database, with no attempt to combine them; 29 (48%) combined individual patient data in a one-stage meta-analysis and 21 (34%) combined estimates from each database using two-stage meta-analysis. Discussion and exploration of heterogeneity was inconsistent across studies.ConclusionsComparing patterns and trends in different populations, or in different primary care EHR databases from the same populations, is important and a common objective for multi-database studies. When combining results from several databases using meta-analysis, provision of separate results from each database is helpful for interpretation. We found that these were often missing, particularly for studies using one-stage approaches, which also often lacked details of any statistical adjustment for heterogeneity and/or clustering. For two-stage meta-analysis, a clear rationale should be provided for choice of fixed effect and/or random effects or other models.


2018 ◽  
Vol 23 (1) ◽  
pp. 18-25
Author(s):  
Bethany R. Sharpless ◽  
Fernando del Rosario ◽  
Zarela Molle-Rios ◽  
Elora Hilmas

OBJECTIVES The objective of this project was to assess a pediatric institution's use of infliximab and develop and evaluate electronic health record tools to improve safety and efficiency of infliximab ordering through auditing and improved communication. METHODS Best use of infliximab was defined through a literature review, analysis of baseline use of infliximab at our institution, and distribution and analysis of a national survey. Auditing and order communication were optimized through implementation of mandatory indications in the infliximab orderable and creation of an interactive flowsheet that collects discrete and free-text data. The value of the implemented electronic health record tools was assessed at the conclusion of the project. RESULTS Baseline analysis determined that 93.8% of orders were dosed appropriately according to the findings of a literature review. After implementation of the flowsheet and indications, the time to perform an audit of use was reduced from 60 minutes to 5 minutes per month. Four months post implementation, data were entered by 60% of the pediatric gastroenterologists at our institution on 15.3% of all encounters for infliximab. Users were surveyed on the value of the tools, with 100% planning to continue using the workflow, and 82% stating the tools frequently improve the efficiency and safety of infliximab prescribing. CONCLUSIONS Creation of a standard workflow by using an interactive flowsheet has improved auditing ability and facilitated the communication of important order information surrounding infliximab. Providers and pharmacists feel these tools improve the safety and efficiency of infliximab ordering, and auditing data reveal that the tools are being used.


2021 ◽  
Author(s):  
Yumi Wakabayashi ◽  
Masamitsu Eitoku ◽  
Narufumi Suganuma

Abstract Background Interventional studies are the fundamental method for obtaining answers to clinical question. However, these studies are sometimes difficult to conduct because of insufficient financial or human resources or the rarity of the disease in question. One means of addressing these issues is to conduct a non-interventional observational study using electronic health record (EHR) databases as the data source, although how best to evaluate the suitability of an EHR database when planning a study remains to be clarified. The aim of the present study is to identify and characterize the data sources that have been used for conducting non-interventional observational studies in Japan and propose a flow diagram to help researchers determine the most appropriate EHR database for their study goals. Methods We compiled a list of published articles reporting observational studies conducted in Japan by searching PubMed for relevant articles published in the last 3 years and by searching database providers’ publication lists related to studies using their databases. For each article, we reviewed the abstract and/or full text to obtain information about data source, target disease or therapeutic area, number of patients, and study design (prospective or retrospective). We then characterized the identified EHR databases. Results In Japan, non-interventional observational studies have been mostly conducted using data stored locally at individual medical institutions (713/1463) or collected from several collaborating medical institutions (351/1463). Whereas the studies conducted with large-scale integrated databases (195/1463) were mostly retrospective (68.2%), 27.2% of the single-center studies, 46.2% of the multi-center studies, and 74.4% of the post-marketing surveillance studies, identified in the present study, were conducted prospectively. Conclusions Our analysis revealed that the non-interventional observational studies were conducted using data stored local at individual medical institutions or collected from collaborating medical institutions in Japan. Disease registries, disease databases, and large-scale databases would enable researchers to conduct studies with large sample sizes to provide robust data from which strong inferences could be drawn. Using our flow diagram, researchers planning non-interventional observational studies should consider the strengths and limitations of each available database and choose the most appropriate one for their study goals. Trial registration Not applicable.


2009 ◽  
Vol 18 (01) ◽  
pp. 40-43 ◽  
Author(s):  
PS Lee ◽  
WS Jian ◽  
CH Kuo ◽  
YC Li

Summary Objective Increasing patient demand for convenient access to their own healthcare data has led to more personal use of the Electronic Health Record (EHR). With “consumer empowerment” being an important issue of EHR, we are seeing a more “patient-centric” approach of EHR from countries around the world. Researchers have reported on issues in EHR sharing including concerns on privacy and security, consumer empowerment, competition among providers, and content standards. This study attempts to analyze prior research and to synthesize comprehensive, empirically-based conceptual models of EHR for personal use. Methods We use “B2C(2B)” to represent this new behavior of EHR sharing and exchange, with “consumer” in the center stage. ResultsBased on different information sharing mechanisms, we summarized the “B2C(2B)” behavior into three models, namely, the Inexpensive data media model, the Internet patient portal model and the Personal portable device model. Models each have their own strengths and weaknesses in their ways to share patient data and to address privacy and security concerns. Conclusion Personal use of EHR under the B2C(2B) model does look promising based on our study. We started to observe a trend that governments around the world are embarking on related projects. With multiple stake-holders involved, we are only beginning to understand the complexity of such undertakings.


2020 ◽  
Vol 16 (3) ◽  
pp. 531-540 ◽  
Author(s):  
Thomas H. McCoy ◽  
Larry Han ◽  
Amelia M. Pellegrini ◽  
Rudolph E. Tanzi ◽  
Sabina Berretta ◽  
...  

2019 ◽  
Vol 10 (1) ◽  
pp. 55-75 ◽  
Author(s):  
Fadoua Khennou ◽  
Nour El Houda Chaoui ◽  
Youness Idrissi Khamlichi

Nowadays, having an electronic health record properly adopted by medical bodies is no longer a challenge. In fact, the critical issue for health practitioners is related to the exchange of health data between different institutes. While some existing standards provide interoperability for e-health systems, they still not offer a coherent solution that can be integrated and used easily. In this author, the paper present OpenEHR, a consistent health standard based on the dual-level scheme, which separates the reference model from the archetypes, allowing a flexible modeling of clinical concepts. However, getting into OpenEHR implementation can be very complex. The purpose of this article is to simplify the integration of OpenEHR, by introducing a stepwise methodology of the migration from legacy SQL-based EHR to an interoperable OpenEHR based NoSQL oriented document model. Successful consolidation was achieved through the deployment of metadata and mapping rules in Java environment project, which allowed a practical automation of the interoperability integration process.


2021 ◽  
Vol 38 ◽  
pp. 101026
Author(s):  
Corinne G. Brooks ◽  
Jessica R. Spencer ◽  
J. Michael Sprafka ◽  
Kimberly A. Roehl ◽  
Junjie Ma ◽  
...  

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