Article
Health Care Sciences & Services
Annette Braunack-Mayer, Belinda Fabrianesi, Jackie Street, Pauline O'Shaughnessy, Stacy M. Carter, Lina Engelen, Lucy Carolan, Rebecca Bosward, David Roder, Kylie Sproston
Summary: This nationally representative survey in Australia reveals uncertainty and caution among the public regarding sharing government health data with private companies. While slightly over half of the respondents support sharing health data, there is strong demand for strict conditions and opt-in consent for data sharing, along with concerns about the private sector's capability in managing government health data.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2021)
Article
Genetics & Heredity
Richard Milne, Katherine I. Morley, Mohamed A. Almarri, Shamim Anwer, Jerome Atutornu, Elena E. Baranova, Paul Bevan, Maria Cerezo, Yali Cong, Alessia Costa, Christine Critchley, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi C. Howard, S. Zakir Hussain, Charlotta Ingvoldstad Malmgren, Vera L. Izhevskaya, Aleksandra Jedrzejak, Cao Jinhong, Megumi Kimura, Erika Kleiderman, Brandi Leach, Keying Liu, Deborah Mascalzoni, Alvaro Mendes, Jusaku Minari, Dianne Nicol, Emilia Niemiec, Christine Patch, Jack Pollard, Barbara Prainsack, Marie Riviere, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A. Sheerah, James Smith, Alexandra Soulier, Claire Steed, Vigdis Stefansdottir, Cornelia Tandre, Adrian Thorogood, Torsten H. Voigt, Nan Wang, Anne V. West, Go Yoshizawa, Anna Middleton
Summary: The study findings highlight the importance of transparency about data use and the goals and potential benefits associated with data sharing to increase trust. Public values knowing who will benefit from the use of data. Different countries show variations in the importance of measures, emphasizing the need for locally sensitive measures to enhance trust.
Article
Health Care Sciences & Services
Yuhang Wang, Bernd Blobel, Bian Yang
Summary: This paper proposes a health data sharing infrastructure called Health Democratization (HD), aiming to empower a democratic health data sharing ecosystem. It addresses the challenges of the underlying infrastructure by promoting the core concept of data democratization, enabling seamless mobility of health data across trust boundaries. The introduction of a reverse onus mechanism to incentivize creditable data accessing behaviors shows promising prospects for enabling a democratic health data-sharing platform.
JOURNAL OF PERSONALIZED MEDICINE
(2022)
Article
Ethics
Simone van der Burg, Leanne Wiseman, Jovana Krkeljas
Summary: Digital farming technologies can improve the quality and quantity of agricultural production while reducing environmental impact, but only if farmers are willing to share their data with agribusinesses. In order to foster trust in data sharing, the EU has implemented a Code of Conduct for agricultural data sharing, highlighting the important role of contracts in building trust relationships.
ETHICS AND INFORMATION TECHNOLOGY
(2021)
Article
Psychology, Clinical
Valentina Bartali, Lex van Velsen
Summary: This study compared two designs of data sharing options in eHealth technology interventions and found that the data perspective design had higher scores in terms of information control. Trust and ease of use were found to play important roles in all sharing-related factors. The study provides actionable design advice on how to design for privacy.
INTERNET INTERVENTIONS-THE APPLICATION OF INFORMATION TECHNOLOGY IN MENTAL AND BEHAVIOURAL HEALTH
(2023)
Article
Oncology
Reshma Jagsi, Krithika Suresh, Chris D. Krenz, Rochelle D. Jones, Kent A. Griffith, Lydia Perry, Sarah T. Hawley, Brian Zikmund-Fisher, Kayte Spector-Bagdady, Jodyn Platt, Raymond De Vries, Angela R. Bradbury, Pranshu Bansal, Melissa Kaime, Monaliben Patel, Richard L. Schilsky, Robert S. Miller, Rebecca Spence
Summary: CancerLinQ aims to improve quality of care and advance research by using data sharing technology. Patient awareness and attitudes towards data sharing were evaluated in a survey, which highlighted the importance of engaging patients and respecting their perspectives.
JCO ONCOLOGY PRACTICE
(2023)
Article
Ethics
Anton Vedder, Daniela Spajic
Summary: Informed consent is important in current privacy, data protection, and confidentiality legislations as a legal basis for processing personal data and health data. However, with the global pandemic and increased use of eHealth applications, a different perspective on this normative approach might emerge. This paper discusses the compatibility of sharing data for healthcare improvement with autonomy in data protection, privacy, and medical confidentiality. It explores ethical justifications for data sharing and examines how existing legislations could hinder this duty.
ETHICS AND INFORMATION TECHNOLOGY
(2023)
Review
Peripheral Vascular Disease
Antonia Vlahou, Dara Hallinan, Rolf Apweiler, Angel Argiles, Joachim Beige, Ariela Benigni, Rainer Bischoff, Peter C. Black, Franziska Boehm, Jocelyn Ceraline, George P. Chrousos, Christian Delles, Pieter Evenepoel, Ivo Fridolin, Griet Glorieux, Alain J. van Gool, Isabel Heidegger, John P. A. Ioannidis, Joachim Jankowski, Vera Jankowski, Carmen Jeronimo, Ashish M. Kamat, Rosalinde Masereeuw, Gert Mayer, Harald Mischak, Alberto Ortiz, Giuseppe Remuzzi, Peter Rossing, Joost P. Schanstra, Bernd J. Schmitz-Draeger, Goce Spasovski, Jan A. Staessen, Dimitrios Stamatialis, Peter Stenvinkel, Christoph Wanner, Stephen B. Williams, Faiez Zannad, Carmine Zoccali, Raymond Vanholder
Summary: This article discusses the impact of GDPR on data and biological sample sharing in biomedical research, highlighting areas for clarification and amendment, as well as emphasizing the importance of public engagement and education.
Article
Multidisciplinary Sciences
Ciara Staunton, Kathrina Tschigg, Gayle Sherman
Summary: The Protection of Personal Information Act (POPIA) aims to strengthen the processing of personal information, particularly health information in South Africa. However, there are challenges and improvements needed in managing health information, such as data quality, transparency, and accountability.
Article
Medicine, Research & Experimental
Despres Caroline, Mamzer Marie-France
Summary: This article explores the factors and logic behind the decision to grant or deny consent for the conservation of tumor samples in a biological resource platform. The findings show that participants readily consented due to their desire to contribute to improving therapeutic medicine, trust in research institutions or doctors, and the unique nature of the samples and lack of constraints. However, they lacked awareness of potential risks and had unclear knowledge of the research's nature and purpose.
JOURNAL OF TRANSLATIONAL MEDICINE
(2023)
Article
Multidisciplinary Sciences
Claudia Acciai, Jesper W. Schneider, Mathias W. Nielsen
Summary: Open data sharing is crucial for scientific progress, yet many authors fail to share their scientific data despite their promises. A randomized audit experiment involving 1,634 participants revealed lower response rates for data requests made to putatively Chinese authors compared to putatively Anglo-Saxon authors, suggesting bias. However, no bias in data-sharing willingness related to ethnic, gender, or status factors was confirmed. Stereotypic beliefs about male Chinese requestors' trustworthiness and deservingness were found to impede scientific progress by hindering the circulation of knowledge.
Article
Engineering, Civil
Qi Fan, Yang Xin, Bin Jia, Yang Zhang, Pinxiang Wang
Summary: In this paper, we propose a novel consortium blockchain-based trust model (COBATS) to achieve efficient and secure shared data storage and sharing in vehicular networks. We also design a trust management model to filter malicious recommendations and ensure high-quality data sharing among vehicles. Additionally, we present a consensus mechanism with joint PoS and PBFT to reduce resource consumption and improve the algorithm's efficiency. Simulation results demonstrate that COBATS can enhance the security and quality of data sharing and effectively handle certain attacks.
IEEE TRANSACTIONS ON INTELLIGENT TRANSPORTATION SYSTEMS
(2023)
Article
Computer Science, Information Systems
Sabrina Mangal, Stephanie Nino de Rivera, Jacky Choi, Meghan Reading Turchioe, Natalie Benda, Marianne Sharko, Annie Myers, Parag Goyal, Lydia Dugdale, Ruth Masterson Creber
Summary: Research participants have a strong desire for transparency in receiving their collected health information. They prefer to receive the information via email, online websites, or paper copies. Preferences vary based on age, education level, financial resources, numeracy, and health literacy. Sharing preferences also vary among different stakeholders and sociodemographic characteristics.
INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS
(2023)
Article
Health Care Sciences & Services
Andreas Hager, Staffan Lindblad, Mats Brommels, Stina Salomonsson, Carolina Wannheden
Summary: Technological advancements have transformed the way individuals with chronic conditions engage in self-care and collaborate in healthcare and research. Patient-controlled real-world data, conceptualized as knowledge commons, has the potential to improve individual and population health. Legal frameworks are needed to ensure patient privacy and control while sharing such data.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2021)
Article
Ethics
T. J. Kasperbauer, Colin Halverson, Abby Garcia, Peter H. Schwartz
Summary: The study found that biobank participants lack understanding of privacy and data-sharing topics, but most of them are unconcerned about associated risks. Participants' answers in tests were largely driven by their trust in the healthcare system rather than a close reading of the information provided to them.
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
(2022)
Article
Public, Environmental & Occupational Health
Louise Laverty, Julie Gandrup, Charlotte A. Sharp, Angelo Ercia, Caroline Sanders, Dawn Dowding, William G. Dixon, Sabine N. van der Veer
Summary: This study explores the discussion of daily PGHD in outpatient consultations between patients with RA and rheumatologists. Clinicians decide when and how to use PGHD during consultations, which can influence the collaborative nature of the interaction. Educating patients and clinicians on the timing and strategies of using PGHD may enhance shared decision-making in clinical practice.
PATIENT EDUCATION AND COUNSELING
(2022)
Review
Health Care Sciences & Services
Aaron Poppleton, Kelly Howells, Isabel Adeyemi, Carolyn Chew-Graham, Lisa Dikomitis, Caroline Sanders
Summary: This study explores the use and perceptions of UK general practice among the Central and Eastern European (CEE) community in the UK. The findings suggest that CEE community members have low levels of registration with general practitioners (GPs), and their ability, desire, and need to engage with GP services are influenced by cultural and sociodemographic factors. Many face difficulties accessing and receiving satisfactory healthcare, leading to distrust and dissatisfaction with general practice. Marginalized subgroups, including Roma, trafficked individuals, and homeless individuals, have particularly poor engagement with GPs. Limited data are available on the impact of Brexit and COVID-19.
HEALTH EXPECTATIONS
(2022)
Letter
Rheumatology
Anastasia-Vasiliki Madenidou, Graham Dinsdale, Muditha Samaranayaka, Lindsay Muir, William G. Dixon, Ariane L. Herrick
Review
Ophthalmology
Katharine Fisher, Caroline Sanders, Emma Stanmore
Summary: This scoping review aimed to explore the impact of Charles Bonnet syndrome (CBS) on older adults' engagement in physical activities. The findings suggested that CBS may interfere with older adults' ability to move and jeopardize their safety while walking. Further empirical research is needed to comprehensively understand the impact of CBS on older adults' participation in physical activities, considering the limited evidence available.
BRITISH JOURNAL OF VISUAL IMPAIRMENT
(2023)
Article
Public, Environmental & Occupational Health
Meghna Jani, Belay Birlie Yimer, David Selby, Mark Lunt, Goran Nenadic, William G. Dixon
Summary: This study aimed to examine the impact of incorporating narrative prescribing instructions and subsequent drug preparation assumptions on adverse event rates, using a worked example of opioids and fracture risk. The results showed that assumptions made during the drug preparation process, especially for those with variability in prescription instructions, can impact subsequent risk estimates.
PHARMACOEPIDEMIOLOGY AND DRUG SAFETY
(2023)
Letter
Rheumatology
Yun-Ting Huang, David A. Jenkins, Niels Peek, William G. Dixon, Meghna Jani
ANNALS OF THE RHEUMATIC DISEASES
(2023)
Article
Health Care Sciences & Services
Quynh Pham, David Wong, Kaylen J. Pfisterer, Dionne Aleman, Nick Bansback, Joseph A. Cafazzo, Alexander J. Casson, Brian Chan, William Dixon, Gerasimos Kakaroumpas, Claudia Lindner, Niels Peek, Henry W. W. Potts, Barbara Ribeiro, Emily Seto, Charlotte Stockton-Powdrell, Alexander Thompson, Sabine van der Veer
Summary: The international deployment of remote monitoring and virtual care technologies can have a positive impact on outcomes. However, transferring these innovations between countries can be complicated by several key differences. Recommendations include considering country-specific factors, mapping available pathways, sharing regulatory learnings, and exploring existing guidance. These recommendations contribute to successful international deployment and increased positive impact.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2023)
Article
Health Care Sciences & Services
William G. Dixon, Sabine N. van der Veer, Syed Mustafa Ali, Lynn Laidlaw, Richard J. B. Dobson, Cathie Sudlow, Tim Chico, Jacqueline A. L. MacArthur, Aiden Doherty
Summary: The use of data from smartphones and wearable devices has great potential for population health research, but the uptake of large-scale mobile health research has not met expectations. Digital person-generated health data are crucial for answering research questions, but there are challenges such as data inequality, selection bias, data collection tools, data harmonization, time series data analysis, and patient and public involvement. Establishing an interdisciplinary community can transform people's lives for the better.
JOURNAL OF MEDICAL INTERNET RESEARCH
(2023)
Article
Health Care Sciences & Services
Syed Mustafa Ali, Rebecca R. Lee, John McBeth, Ben James, Sean McAlister, Alessandro Chiarotto, William G. Dixon, Sabine N. van der Veer
Summary: This study aimed to inform the development of cross-culturally acceptable digital pain self-report tools by understanding the similarities and differences between ethnic groups in pain experiences and self-reporting needs. The findings showed that participants from different ethnic groups faced similar challenges in communicating their pain to healthcare professionals, but had differences in beliefs about pain causes, attitudes toward pain medication, and experiences of stigma and gender norms influencing pain-reporting behavior. Future research and development should address these differences in pain perceptions and beliefs, factors influencing pain reporting behavior, and language requirements to improve cross-cultural acceptability and equity of digital pain self-report tools.
JMIR HUMAN FACTORS
(2023)
Article
Rheumatology
Yun-Ting Huang, David A. Jenkins, Belay Birlie Yimer, Jose Benitez-Aurioles, Niels Peek, Mark Lunt, William G. Dixon, Meghna Jani
Summary: This study investigated opioid prescribing trends and the impact of the COVID-19 pandemic on opioid prescribing in patients with rheumatic and musculoskeletal diseases (RMDs). The results showed that the number of new opioid users for RA, PsA, and FM increased and then decreased after 2018. The number of prevalent opioid users for all RMDs increased but plateaued or dropped after 2018. During the COVID-19 pandemic, there were significant changes in the trend of prevalent opioid users for RA, PsA, and FM.
Article
Health Care Sciences & Services
Azadeh Assadi, Peter C. Laussen, Andrew J. Goodwin, Sebastian Goodfellow, William Dixon, Robert W. Greer, Anusha Jegatheeswaran, Devin Singh, Melissa McCradden, Sara N. Gallant, Anna Goldenberg, Danny Eytan, Mjaye L. Mazwi
Summary: Machine Learning offers potential benefits in healthcare, but successful integration into clinical settings remains a challenge. This paper proposes a framework based on systems engineering principles to guide the development and integration of Machine Learning models in healthcare.
FRONTIERS IN DIGITAL HEALTH
(2022)
Article
Rheumatology
Julie Gandrup, David A. Selby, Sabine N. van der Veer, John Mcbeth, William G. Dixon
Summary: This study aimed to explore the frequency of self-reported flares and their association with preceding symptoms collected through a smartphone app by people with RA. The results suggest that patient-reported flares are common and are associated with higher daily RA symptom scores in the preceding week.
RHEUMATOLOGY ADVANCES IN PRACTICE
(2022)
Article
Health Care Sciences & Services
Emily Griffiths, Rebecca M. Joseph, George Tilston, Sarah Thew, Zoher Kapacee, William Dixon, Niels Peek
Summary: This study aimed to describe the approaches of UK organizations in helping researchers find data and assess the findability of health data for research. The survey revealed that most organizations made metadata publicly available, but the findability on the internet still needed improvement. Analysis of search results on two major search engines showed that the findability of health datasets had not improved in 2021 compared to 2018.
BMJ HEALTH & CARE INFORMATICS
(2022)
Article
Information Science & Library Science
Rony Medaglia, Ben Eaton, Jonas Hedman, Edgar A. Whitley
Summary: Establishing IT governance arrangements is a deeply political process where power relationships play a crucial role. This study investigates the inscription of power relationships in the governance of digital identity systems in Denmark and the United Kingdom, identifying two distinct mechanisms of power inscription into IT governance: power cultivation and power limitation.
INFORMATION SYSTEMS JOURNAL
(2022)