Australian General Practitioner Perceptions to Sharing Clinical Data for Secondary Use: A Mixed Method Approach

2021 ◽  
Author(s):  
Richard J Varhol ◽  
Sean Randall ◽  
James H Boyd ◽  
Suzanne Robinson
Keyword(s):  
Population Health ◽  
Data Sharing ◽  
General Practitioners ◽  
Clinical Data ◽  
Health Research ◽  
Business Models ◽  
Health Planning ◽  
Governance Structure ◽  
Face To Face ◽  
Secondary Use

Abstract ObjectiveThe potential for data collected in general practice to be linked and used to address health system challenges of maintaining quality care, accessibility and safety, including pandemic support, has led to an increased interest in public acceptability of data sharing, however practitioners have rarely been asked to share their opinions on the topic. This paper attempts to gain an understanding of general practitioners’ perceptions on routinely sharing practice data for both population health planning and healthcare research both from an Australian and international perspective.Materials and MethodsA mixed methods approach combining an initial online survey followed by face-to-face interviews (before and during COVID-19), designed to identify the barriers and facilitators to sharing data, were conducted on a representative sample of general practitioners across Western Australia (WA).ResultsEighty online surveys and ten face-to-face interviews with general practitioners were conducted from Nov 2020 – May 2021. Although respondents overwhelmingly identified the importance of population health research, their willingness to participate in data sharing programs was determined by a perception of trust associated with the organisation collecting and analysing shared data; a clearly defined purpose and process of collected data; including a governance structure providing confidence in the data sharing initiative simultaneously enabling a process of data sovereignty and autonomy.DiscussionResults indicate strong agreement around the importance of sharing patient’s medical data for population and health research and planning. Concerns pertaining to lack of trust, governance and secondary use of data continue to be a setback to data sharing with implications for primary care business models being raised.ConclusionTo further increase general practitioner’s confidence in sharing their clinical data, efforts should be directed towards implementing a robust data governance structure with an emphasis on transparency and representative stakeholder inclusion as well as identifying the role of government and government funded organisations, as well as building trust with the entities collecting and analysing the data.

scholarly journals Conducting Population Health Research during the COVID-19 Pandemic: Impacts and Recommendations

2021 ◽  
Vol 13 (6) ◽  
pp. 3320
Author(s):  
Amy R. Villarosa ◽  
Lucie M. Ramjan ◽  
Della Maneze ◽  
Ajesh George
Keyword(s):  
Data Collection ◽  
Health Services ◽  
Data Quality ◽  
Population Health ◽  
Health Research ◽  
Alternative Methods ◽  
Residential Aged Care ◽  
Recruitment Methods ◽  
Face To Face ◽  
The Impact

The COVID-19 pandemic has resulted in many changes, including restrictions on indoor gatherings and visitation to residential aged care facilities, hospitals and certain communities. Coupled with potential restrictions imposed by health services and academic institutions, these changes may significantly impact the conduct of population health research. However, the continuance of population health research is beneficial for the provision of health services and sometimes imperative. This paper discusses the impact of COVID-19 restrictions on the conduct of population health research. This discussion unveils important ethical considerations, as well as potential impacts on recruitment methods, face-to-face data collection, data quality and validity. In addition, this paper explores potential recruitment and data collection methods that could replace face-to-face methods. The discussion is accompanied by reflections on the challenges experienced by the authors in their own research at an oral health service during the COVID-19 pandemic and alternative methods that were utilised in place of face-to-face methods. This paper concludes that, although COVID-19 presents challenges to the conduct of population health research, there is a range of alternative methods to face-to-face recruitment and data collection. These alternative methods should be considered in light of project aims to ensure data quality is not compromised.

scholarly journals Use and misuse of instant messaging in clinical data sharing: the EHRA-SMS survey

EP Europace ◽  
2021 ◽  
Author(s):  
Federico Guerra ◽  
Dominik Linz ◽  
Rodrigue Garcia ◽  
Varvara Kommata ◽  
Jedrzej Kosiuk ◽  
...  
Keyword(s):  
Data Sharing ◽  
Clinical Data ◽  
Online Survey ◽  
Instant Messaging ◽  
Medical Community ◽  
Medical Professionals ◽  
General Data Protection Regulation ◽  
Face To Face ◽  
Pros And Cons ◽  
General Data

AbstractInstant messaging (IM) enables medical professionals to quickly share clinical data to their peers for counselling. Purpose of this survey is to assess the habits related to IM, their application in clinical practice and the perceived pros and cons. An online survey was distributed to the medical community via newsletters, Twitter, LinkedIn, and Facebook. The survey consisted of 22 questions made on an individual-basis and collected anonymously on SurveyMonkey. A total of 287 subjects from 33 countries responded to the survey (mean age 43 years, 74.8% male). Of all respondents, 88.3% routinely send and 90.3% receive clinical data through IM which was second only to face-to-face contact as the preferred method for sharing clinical data. Twelve-lead electrocardiograms (88.6%), medical history (61.4%), and echo loops (55.7%) were the data shared most often. Nearly half of the clinical data that are sent (43%) or received (44%) are not anonymized. In the same way, 29.3% of the respondents were not aware of the European General Data Protection Regulation (GDPR) at the time of the survey. IM apps are used by medical professionals worldwide to share and discuss clinical data and are preferred to many other methods of data sharing, being second only to face-to-face contact. IM are often used to share many different types of clinical data, being perceived as a fast and easy way of communication. Medical professionals should be aware of the appropriate use of IM to prevent legal and privacy issues.

scholarly journals The use of instant messaging in clinical data sharing: the EHRA SMS survey

EP Europace ◽  
2021 ◽  
Vol 23 (Supplement_3) ◽  
Author(s):  
F Guerra ◽  
D Linz ◽  
R Garcia ◽  
B Kommata ◽  
J Kosiuk ◽  
...  
Keyword(s):  
Data Sharing ◽  
Clinical Data ◽  
Data Protection ◽  
Online Survey ◽  
Instant Messaging ◽  
Digital Health ◽  
General Data Protection Regulation ◽  
Face To Face ◽  
Phone Calls ◽  
Privacy Issues

Abstract Funding Acknowledgements Type of funding sources: None. Background Nowadays, instant messaging (IM) provides fast and widespread communication. These platforms and apps enable the physicians to quickly share and send clinical data to their peers, to send information to their patients regarding their illnesses and to be reached for counselling and advise. Nevertheless, the use of IM has never been assessed in the cardiology community up until now. Purpose To assess the habits of cardiologists related to modern communication tools, their primary and secondary uses in clinical practice and the potential differences and preferences between different media in terms of ease of access, usefulness and trustworthiness. Methods An online survey was promoted by the EHRA e-Communication Committee and the EHRA Scientific Initiative Committee during the ESC Digital Health Week. All cardiologists were invited to participate via Twitter, LinkedIn, Facebook and other dedicated channels. The survey consisted of 22 questions and was made anonymous. The questions were made on an individual-basis and collected on SurveyMonkey. Results 287 physicians from 33 countries responded to the survey. The mean age of the respondents was 43.4 ± 11.5 years, and 74.8% of them were male. 88.3% of all respondents routinely sends and 90.3% receives clinical data through IM. IM is used at least once a week (36.4%) or even once or more a day (40.4%) for sharing clinical data. WhatsApp is the most used IM app to share clinical data (79.4%). On a scale of 1 to 5, IM was second only to face-to-face contact (average 4.46) as the preferred method for sharing clinical data (average 3.69) and was considered better than phone calls (average 3.34) and e-mails (average 3.21). Twelve-lead ECGs (88.6%), medical history (61.4%) and echo loops (55.7%) are the data shared most often. Among potential pros of IM, the respondents listed being a fast way of communication (82.0%) and making it easy to contact colleagues (76.7%), while privacy issues regarding IM apps providers (62.7%) and other colleagues (45.6%) were commonly perceived as drawbacks. Only 57.4% of all respondents anonymize clinical data before sharing them through IM, and only 44.0% of the data received are reported to be anonymized. Of note, 29.3% of the respondents were not aware of the European General Data Protection Regulation (GDPR) on data protection at the time of the survey, and 29.8% do not know if their institution has a specific policy regarding the use of IM for professional use. Conclusions IM apps are used by cardiologists worldwide to share and discuss clinical data and are preferred to many other methods of data sharing, being second only to face-to-face contact. IM are often used and to share many different types of clinical data, being perceived as a fast and easy way of communication. Cardiologists should be sensitised to appropriate use of IM in accordance to GDPR and local policies in order to prevent legal and privacy issues.

scholarly journals 4.C. Round table: Joining forces: frameworks for international and multi-sectoral collaborations in health information

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
◽  
Keyword(s):  
Public Health ◽  
Big Data ◽  
Health Information ◽  
Population Health ◽  
Round Table ◽  
Secondary Use ◽  
Use Of Data ◽  
National Initiatives ◽  
Information Research

Abstract Countries have a wide range of lifestyles, environmental exposures and different health(care) systems providing a large natural experiment to be investigated. Through pan-European comparative studies, underlying determinants of population health can be explored and provide rich new insights into the dynamics of population health and care such as the safety, quality, effectiveness and costs of interventions. Additionally, in the big data era, secondary use of data has become one of the major cornerstones of digital transformation for health systems improvement. Several countries are reviewing governance models and regulatory framework for data reuse. Precision medicine and public health intelligence share the same population-based approach, as such, aligning secondary use of data initiatives will increase cost-efficiency of the data conversion value chain by ensuring that different stakeholders needs are accounted for since the beginning. At EU level, the European Commission has been raising awareness of the need to create adequate data ecosystems for innovative use of big data for health, specially ensuring responsible development and deployment of data science and artificial intelligence technologies in the medical and public health sectors. To this end, the Joint Action on Health Information (InfAct) is setting up the Distributed Infrastructure on Population Health (DIPoH). DIPoH provides a framework for international and multi-sectoral collaborations in health information. More specifically, DIPoH facilitates the sharing of research methods, data and results through participation of countries and already existing research networks. DIPoH's efforts include harmonization and interoperability, strengthening of the research capacity in MSs and providing European and worldwide perspectives to national data. In order to be embedded in the health information landscape, DIPoH aims to interact with existing (inter)national initiatives to identify common interfaces, to avoid duplication of the work and establish a sustainable long-term health information research infrastructure. In this workshop, InfAct lays down DIPoH's core elements in coherence with national and European initiatives and actors i.e. To-Reach, eHAction, the French Health Data Hub and ECHO. Pitch presentations on DIPoH and its national nodes will set the scene. In the format of a round table, possible collaborations with existing initiatives at (inter)national level will be debated with the audience. Synergies will be sought, reflections on community needs will be made and expectations on services will be discussed. The workshop will increase the knowledge of delegates around the latest health information infrastructure and initiatives that strive for better public health and health systems in countries. The workshop also serves as a capacity building activity to promote cooperation between initiatives and actors in the field. Key messages DIPoH an infrastructure aiming to interact with existing (inter)national initiatives to identify common interfaces, avoid duplication and enable a long-term health information research infrastructure. National nodes can improve coordination, communication and cooperation between health information stakeholders in a country, potentially reducing overlap and duplication of research and field-work.

New digital models of care in ophthalmology, during and beyond the COVID-19 pandemic

2021 ◽  
pp. bjophthalmol-2020-317683
Author(s):  
Yih-Chung Tham ◽  
Rahat Husain ◽  
Kelvin Yi Chong Teo ◽  
Anna Cheng Sim Tan ◽  
Annabel Chee Yen Chew ◽  
...  
Keyword(s):  
Business Models ◽  
Digital Health ◽  
Models Of Care ◽  
Clinical Practices ◽  
Digital Models ◽  
Face To Face ◽  
Potential Barriers ◽  
Digital Business Models ◽  
Brick And Mortar ◽  
Clinical Models

COVID-19 has led to massive disruptions in societal, economic and healthcare systems globally. While COVID-19 has sparked a surge and expansion of new digital business models in different industries, healthcare has been slower to adapt to digital solutions. The majority of ophthalmology clinical practices are still operating through a traditional model of ‘brick-and-mortar’ facilities and ‘face-to-face’ patient–physician interaction. In the current climate of COVID-19, there is a need to fuel implementation of digital health models for ophthalmology. In this article, we highlight the current limitations in traditional clinical models as we confront COVID-19, review the current lack of digital initiatives in ophthalmology sphere despite the presence of COVID-19, propose new digital models of care for ophthalmology and discuss potential barriers that need to be considered for sustainable transformation to take place.

scholarly journals Bridging research integrity and global health epidemiology (BRIDGE) statement: guidelines for good epidemiological practice

2020 ◽  
Vol 5 (10) ◽  
pp. e003236
Author(s):  
Sandra Alba ◽  
Kristien Verdonck ◽  
Annick Lenglet ◽  
Susan F Rumisha ◽  
Martijn Wienia ◽  
...  
Keyword(s):  
Global Health ◽  
Health Research ◽  
Research Integrity ◽  
Epidemiological Studies ◽  
Global Health Research ◽  
Face To Face ◽  
Protocol Development ◽  
Development Data ◽  
Collection Data ◽  
Mutual Accountability

BackgroundResearch integrity and research fairness have gained considerable momentum in the past decade and have direct implications for global health epidemiology. Research integrity and research fairness principles should be equally nurtured to produce high-quality impactful research—but bridging the two can lead to practical and ethical dilemmas. In order to provide practical guidance to researchers and epidemiologist, we set out to develop good epidemiological practice guidelines specifically for global health epidemiology, targeted at stakeholders involved in the commissioning, conduct, appraisal and publication of global health research.MethodsWe developed preliminary guidelines based on targeted online searches on existing best practices for epidemiological studies and sought to align these with key elements of global health research and research fairness. We validated these guidelines through a Delphi consultation study, to reach a consensus among a wide representation of stakeholders.ResultsA total of 45 experts provided input on the first round of e-Delphi consultation and 40 in the second. Respondents covered a range of organisations (including for example academia, ministries, NGOs, research funders, technical agencies) involved in epidemiological studies from countries around the world (Europe: 19; Africa: 10; North America: 7; Asia: 5; South-America: 3 Australia: 1). A selection of eight experts were invited for a face-to-face meeting. The final guidelines consist of a set of 6 standards and 42 accompanying criteria including study preparation, protocol development, data collection, data management, data analysis, dissemination and communication.ConclusionWhile guidelines will not by themselves guard global health from questionable and unfair research practices, they are certainly part of a concerted effort to ensure not only mutual accountability between individual researchers, their institutions and their funders but most importantly their joint accountability towards the communities they study and society at large.

scholarly journals Assessing and piloting interoperability for population health research

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
F Estupiñán-Romero ◽  
J Gonzalez-García ◽  
E Bernal-Delgado
Keyword(s):  
Case Studies ◽  
Population Health ◽  
Health Research ◽  
Network Architecture ◽  
Digital Health ◽  
Data Extraction ◽  
Health Data ◽  
Research Network ◽  
Technical Solution ◽  
Privacy And Security

Abstract Issue/problem Interoperability is paramount when reusing health data from multiple data sources and becomes vital when the scope is cross-national. We aimed at piloting interoperability solutions building on three case studies relevant to population health research. Interoperability lies on four pillars; so: a) Legal frame (i.e., compliance with the GDPR, privacy- and security-by-design, and ethical standards); b) Organizational structure (e.g., availability and access to digital health data and governance of health information systems); c) Semantic developments (e.g., existence of metadata, availability of standards, data quality issues, coherence between data models and research purposes); and, d) Technical environment (e.g., how well documented are data processes, which are the dependencies linked to software components or alignment to standards). Results We have developed a federated research network architecture with 10 hubs each from a different country. This architecture has implied: a) the design of the data model that address the research questions; b) developing, distributing and deploying scripts for data extraction, transformation and analysis; and, c) retrieving the shared results for comparison or pooled meta-analysis. Lessons The development of a federated architecture for population health research is a technical solution that allows full compliance with interoperability pillars. The deployment of this type of solution where data remain in house under the governance and legal requirements of the data owners, and scripts for data extraction and analysis are shared across hubs, requires the implementation of capacity building measures. Key messages Population health research will benefit from the development of federated architectures that provide solutions to interoperability challenges. Case studies conducted within InfAct are providing valuable lessons to advance the design of a future pan-European research infrastructure.

scholarly journals Digital Education on Prudent Antibiotic Use—Evaluation of a Massive Open Online Course for General Practitioners in Germany

2020 ◽  
Vol 41 (S1) ◽  
pp. s192-s193
Author(s):  
Florian Salm ◽  
Tobias Kramer ◽  
Cornelius Remschmidt ◽  
Petra Gastmeier ◽  
Sandra Schneider
Keyword(s):  
Antibiotic Therapy ◽  
General Practitioners ◽  
Antibiotic Use ◽  
Background Information ◽  
Online Course ◽  
Massive Open Online ◽  
Questionnaire Response ◽  
Face To Face ◽  
Massive Open Online Course ◽  
Assessment Questionnaire

Background: Antimicrobial resistance is a growing global health problem predominantly driven by overuse of antibiotics. In humans, most antibiotics are used outside the hospital. Overprescribing for acute respiratory infections (ARIs) is common despite clear guidelines. The need for further training of general practitioners is well known. Objective: To develop and evaluate a massive open online course (MOOC) on antibiotic therapy of common infectious diseases in general practice. Methods: A 4-week MOOC was developed on the basis of previous face-to-face trainings (platform, Hasso Plattner Institute for Digital Engineering) and was conducted 3 times between July 10, 2017, and May 31, 2019. The course was promoted through various general practitioner (GP) networks, local multipliers, and conferences and in the local trade press. In addition to epidemiological background information, the focus was on guideline-based diagnostics and treatment of ARI, side effects of antibiotics, correct drug selection, dosage and duration of indicated antibiotic therapy, as well as aspects of doctor–patient communication. Content included videos, self-tests, additional written material, and an optional exam. At the end of the course, participants were asked to complete a voluntary, anonymous online assessment questionnaire (LimeSurveyPro software). Usage data from the MOOC platform and data from the questionnaire were analyzed using IBM SPSS statistical software. Results: In total, 2,177 registered persons retrieved content (= learners). The proportion of learners dropped from 99.6% in week 1 to 40.7% in week 4. However, among those attending week 4, the average proportion of content used was still high (74.5%). Furthermore, 27.5% of learners completed the course, 23.8% took the exam, and 19.7% passed the exam. Moreover, 284 learners answered the assessment questionnaire (response rate, 13.0%); 62.3% were women, and the mean age was 45.9 years. Also, 225 participants (79.2%) stated that they were physicians; 122 of these worked as general practitioners (54.2% of physicians). Among the other physicians, 23% stated were in specialist training and 15.6% had a different specialist designation. The average overall rating of the course was 1.31 (1 = very good to 6 = not sufficient). General practitioners rated it slightly better than other physicians (1.23 vs 1.41). The clinical relevance was rated at 1.27 (GPs vs other physicians, 1.18 vs 1.35). For all scores, see Table 1. Conclusions: A massive open online course appears to be an appropriate format in which to deliver clinical relevant content concerning prudent antibiotic use in the outpatient setting. It is a good complement to existing face-to-face formats and helps to cover needs related to antibiotic training.Funding: NoneDisclosures: None

scholarly journals Utilizing asynchronous email interviews for health research: overview of benefits and drawbacks

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Michelle Amri ◽  
Christina Angelakis ◽  
Dilani Logan
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Data Quality ◽  
Health Research ◽  
Geographic Location ◽  
Public Health Research ◽  
Data Accuracy ◽  
Global Public Health ◽  
Snowball Sampling ◽  
Face To Face

Abstract Objective Through collating observations from various studies and complementing these findings with one author’s study, a detailed overview of the benefits and drawbacks of asynchronous email interviewing is provided. Through this overview, it is evident there is great potential for asynchronous email interviews in the broad field of health, particularly for studies drawing on expertise from participants in academia or professional settings, those across varied geographical settings (i.e. potential for global public health research), and/or in circumstances when face-to-face interactions are not possible (e.g. COVID-19). Results Benefits of asynchronous email interviewing and additional considerations for researchers are discussed around: (i) access transcending geographic location and during restricted face-to-face communications; (ii) feasibility and cost; (iii) sampling and inclusion of diverse participants; (iv) facilitating snowball sampling and increased transparency; (v) data collection with working professionals; (vi) anonymity; (vii) verification of participants; (viii) data quality and enhanced data accuracy; and (ix) overcoming language barriers. Similarly, potential drawbacks of asynchronous email interviews are also discussed with suggested remedies, which centre around: (i) time; (ii) participant verification and confidentiality; (iii) technology and sampling concerns; (iv) data quality and availability; and (v) need for enhanced clarity and precision.

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