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PubMed2001

Neuroimaging databases.

These are comments written by the Governing Council of the Organization for Human Brain Mapping (OHBM), the primary international organization dedicated to neuroimaging research. The purpose of these comments is to identify and frame issues concerning data sharing within the neuroimaging community. Data sharing has become an important issue in most fields of science. The neuroimaging community is no exception, and it clearly perceives potential benefits in such efforts, as have been realized in other fields such as genomics. At the same time, such efforts can be costly (both in time and expense), and there are important factors that differentiate brain imaging from other fields and that pose specific challenges to the generation of useful neuroimaging databases. These include the rapid pace of change in brain imaging technologies; the complexity of the variables that must be specified to meaningfully interpret the results (such as the method of image acquisition, behavioral design, and subject characteristics); and concerns about participant confidentiality. These issues are outlined with the goal of framing and promoting a public discussion of the benefits and risks of data sharing, which can inform the field of neuroimaging as well as others that face similar challenges.

Brain↗
PubMed2002

Nuclear cardiology patient tracking using a palm-based device: methods and clinician satisfaction.

Handheld personal computers are popular, easy to use, inexpensive, portable, and can share data among different operating systems. In our institution, nuclear cardiology testing is performed in the nuclear medicine department and jointly reported by radiologists and cardiologists. The objective of this article is to describe a system for recording nuclear cardiology data and to assess clinician satisfaction using handheld computers with the Palm Operating System. We devised a Palm-based relational database/ using commercially available software (HanDBase) that requires minimal computer expertise to implement and maintain. Data are collected by the cardiologist and synchronized to a single central relational database compatible with Microsoft Access. We assessed cardiologists' satisfaction with this system. Cardiologists unanimously agreed that this system had a positive impact on patient management and cardiology fellow education. They were satisfied with ease of data input, sharing, retrieval, and clarity of data display. The cardiologist with the least experience in using the software took longer to input data and thought that it prolonged the nuclear cardiology rounds. The idea to develop this software was to ease data entry using shortcuts and lists, limiting data stored to that essential for patient management and also to transmit data easily between staff. The cardiologist with the most experience in using the software felt more comfortable and satisfied with it. This was perhaps due to his continuous involvement in the development of this system. Like any new system, there is a learning curve in using this software. The software was easy to customize, and support and tutorials were found on the manufacturer's Web site. The system of collecting data using handheld computers with the Palm Operating System is easy to use, relatively inexpensive, accurate, and secure. The user-friendly system provides prompt, complete, and accurate data, enhancing the education of fellows while facilitating the job of cardiologists.

Attitude of Health Personnel↗
PubMed2024

ONCOLINER: A new solution for monitoring, improving, and harmonizing somatic variant calling across genomic oncology centers.

The characterization of somatic genomic variation associated with the biology of tumors is fundamental for cancer research and personalized medicine, as it guides the reliability and impact of cancer studies and genomic-based decisions in clinical oncology. However, the quality and scope of tumor genome analysis across cancer research centers and hospitals are currently highly heterogeneous, limiting the consistency of tumor diagnoses across hospitals and the possibilities of data sharing and data integration across studies. With the aim of providing users with actionable and personalized recommendations for the overall enhancement and harmonization of somatic variant identification across research and clinical environments, we have developed ONCOLINER. Using specifically designed mosaic and tumorized genomes for the analysis of recall and precision across somatic SNVs, insertions or deletions (indels), and structural variants (SVs), we demonstrate that ONCOLINER is capable of improving and harmonizing genome analysis across three state-of-the-art variant discovery pipelines in genomic oncology.

Humans↗
PubMed2001

A database generator for human brain imaging.

Sharing scientific data containing complex information requires new concepts and new technology. NEUROGENERATOR is a database generator for the neuroimaging community. A database generator is a database that generates new databases. The scientists submit raw PET and fMRI data to NEUROGENERATOR, which then processes the data in a uniform way to create databases of homogeneous data suitable for data sharing, met-analysis and modelling the human brain at the systems level. These databases are then distributed to the scientists.

Brain↗
PubMed2004

E-neuroscience: challenges and triumphs in integrating distributed data from molecules to brains.

Imaging, from magnetic resonance imaging (MRI) to localization of specific macromolecules by microscopies, has been one of the driving forces behind neuroinformatics efforts of the past decade. Many web-accessible resources have been created, ranging from simple data collections to highly structured databases. Although many challenges remain in adapting neuroscience to the new electronic forum envisioned by neuroinformatics proponents, these efforts have succeeded in formalizing the requirements for effective data sharing and data integration across multiple sources. In this perspective, we discuss the importance of spatial systems and ontologies for proper modeling of neuroscience data and their use in a large-scale data integration effort, the Biomedical Informatics Research Network (BIRN).

Animals↗
PubMed2001

Sharing medical data for patient path analysis with data mining method.

The Agora Data project started in October 1997 in France. The objective was to share medical data between several medical institutions to analysis medical care pathways for patients that suffer from low back pain. The analysis of the medical records decomposed in three steps allowed us to produce knowledge on medical contacts of patients with the health care system. In order to study the relations between these contacts, we created medical path of patients within the framework of the possible contacts we had isolated. This work relates the implementation and the first results of the pilot study.

Confidentiality↗
PubMed2004

Enabling the sharing of neuroimaging data through well-defined intermediate levels of visibility.

The sharing of neuroimagery data offers great benefits to science, however, data owners sharing their data face substantial custodial responsibilities, such as ensuring data sets are correctly interpreted in their new shared context, protecting the identity and privacy of human research participants, and safeguarding the understood order of use. Given choices of sharing widely or not at all, the result will often be no sharing, due to the inability of data owners to control their exposure to the risks associated with data sharing. In this context, data sharing is enabled by providing data owners with well-defined intermediate levels of data visibility, progressing incrementally toward public visibility. In this paper, we define a novel and general data sharing model, Structured Sharing Communities (SSC), meeting this requirement. Arbitrary visibility levels representing collaborative agreements, consortium memberships, research organizations, and other affiliations are structured into a policy space through explicit paths of permissible information flow. Operations enable users and applications to manage the visibility of data and enforce access permissions and restrictions. We show how a policy space can be implemented in realistic neuroinformatic architectures with acceptable assurance of correctness, and briefly describe an open source implementation effort.

Academies and Institutes↗
PubMed2006

Remembering the basics: administrative technology and nursing care in a hospital emergency department.

This article discusses findings from qualitative research conducted with nurses in a hospital Emergency Department. It explores nurses' attitudes towards a patient care information system (PCIS) installed by hospital management in an effort to improve patient care through more effective "data sharing". Nurses' definitions of care are examined vis-à-vis their perceptions of administrative tasks and technologies like the PCIS. Efforts are made to link the system with wider patterns of administrative technology acquisition in health care and users' everyday/night experiences of using these technologies. The article also presents key themes from a literature review of recent case studies about information technology implementation in nursing. Results show that nurses choose to define care in a way that highlights relationship building and physical/emotional connectedness between nurse and patient. The article contends that nurses' refusal to incorporate technology-enabled "data sharing" into their definitions of care is indicative of efforts to make visible their caring work, often rendered invisible by the feminization of care. The article concludes by reaffirming the importance of 'remembering the basics', i.e., patient care is rooted in the skilled practice of individual caregivers, not in data sharing.

Canada↗
PubMed1995

Coordinating shared care using electronic data interchange.

Shared care is the situation in which physicians jointly treat the same patient. Shared care may occur with elderly patients suffering from several health problems, patients with chronic disorders such as diabetes, mellitus, obstructive pulmonary diseases, or cardiological disorders. For a number of health problems, including diabetes, shared care protocols have been developed involving division of tasks between health care providers from different disciplines [1]. Optimal communication is considered to be a vital aspect of shared care, both from medical and cost-effectiveness points of view, but at the same time communication forms the bottleneck as physicians often lack time to comply with the protocol [2]. At present, new technologies are emerging that hold the promise of improving communication between health care providers. One such technology is Electronic Data Interchange (EDI), defined as "the replacement of paper documents by standard electronic messages conveyed from one computer to another without manual intervention" [3]. In Europe, the ISO syntax standard EDIFACT has been adopted as the standard for defining EDI-messages [4]. In The Netherlands, coordination of the standardization of health care messages is performed by a national organization. At present, several standardized messages are available for a variety of purposes. One is a message for data exchange between physicians; in this message, however, only physician-patient- and hospital-identifying data are structured, and all medical data is transferred as free text. Consequently, using this message, the receiving system is unable to integrate the data into the computer-based patient record. In order to support shared care, a message is needed that can also transfer the structure of the data in a computer-based record in order to allow integration of records from multiple sources. Therefore, we developed a new message, called MEDEUR, that is designed for integrated patient data exchange between computer-based patient records. The message can contain both administrative and medical data and can be used for transmission of a complete medical record, or sections of it. Our departments are working on a project in which general practitioners and specialists use their own electronic medical record system for storing data of jointly treated patients. In addition, the participating physicians use the MEDEUR message standard in communicating about these patients. The use of EDI enables physicians to transmit patient data electronically to another physician's computer system. The receiving physician can store the data automatically in his electronic medical record without having to re-type the data. We will demonstrate the electronic data interchange functionality of the general practitioner's information system, ELIAS, and the integrated composing and storing of electronic messages. We will also discuss several system design issues.

Computer Communication Networks↗
PubMed2026

The Network of National COVID-19 Data Portals: public health equity through collaboration.

The network of the national COVID-19 Data Portals was developed and linked to the COVID-19 Data Portal (https://www.covid19dataportal.org/)inresponsetothe need for rapid data sharing and analysis during the 2020-2022 SARS-CoV-2 pandemic. Built on open-source code developed by the Swedish COVID-19 Data Portal (now the Swedish Pathogens Portal, www.pathogens.se) the network included 12 national portals addressing demand for local open data sharing and access, across data types and resources. It provides a robust case study of national initiatives for FAIR (Findable, Accessible, Interoperable and Reusable) resources and a foundation for future pandemic preparedness across pathogens globally. In this paper we outline the structure of the origins of the network of National COVID-19 Datal Portals, the technical aspects and code originating from the Swedish Portal and provide an overview of the services and tools offered by each Portal. The paper showcases the process and operation of four Portals: Sweden, Poland, Spain, Norway and The Netherlands. In this study, we observe that pandemic response greatly benefits from an established infrastructure that can be quickly mobilised, developed and extended. Collaborations and preparation built on solid foundations over several years, supported by investment in the form of national and international research grants, is key for sustainability, continuation and readiness to deploy such efforts.

COVID-19↗
PubMed1995

Position and orientation in space of bones during movement: anatomical frame definition and determination.

This paper deals with methodological problems related to the reconstruction of the position and orientation of the human pelvis and the lower limb bones in space during the execution of locomotion and physical exercises using a stereophotogrammetric system. The intention is to produce a means of quantitative description of joint kinematics and dynamics for both research and application. Anatomical landmarks and bone-embedded anatomical reference systems are defined. A contribution is given to definition of variables and relevant terminology. The concept of anatomical landmark calibration is introduced and relevant experimental approaches presented. The problem of data sharing is also addressed. This material is submitted to the scientific community for consideration as a basis for standardization. RELEVANCE: In order to make movement analysis effective in the solution of clinical problems, a structured conceptual background is needed in addition to standardized definitions and methods. Technical solutions which make data sharing and relevant data banks possible are also of primary importance. This paper makes suggestions in this context.

Journal Article↗
PubMed2006

Creation of clinical research databases in the 21st century: a practical algorithm for HIPAA Compliance.

BACKGROUND: Enforcement of the Health Insurance Portability and Accountability Act (HIPAA) began in April, 2003. Designed as a law mandating health insurance availability when coverage was lost, HIPAA imposed sweeping and broad-reaching protections of patient privacy. These changes dramatically altered clinical research by placing sizeable regulatory burdens upon investigators with threat of severe and costly federal and civil penalties. This report describes development of an algorithmic approach to clinical research database design based upon a central key-shared data (CK-SD) model allowing researchers to easily analyze, distribute, and publish clinical research without disclosure of HIPAA Protected Health Information (PHI). METHODS: Three clinical database formats (small clinical trial, operating room performance, and genetic microchip array datasets) were modeled using standard structured query language (SQL)-compliant databases. The CK database was created to contain PHI data, whereas a shareable SD database was generated in real-time containing relevant clinical outcome information while protecting PHI items. Small (< 100 records), medium (< 50,000 records), and large (> 10(8) records) model databases were created, and the resultant data models were evaluated in consultation with an HIPAA compliance officer. RESULTS: The SD database models complied fully with HIPAA regulations, and resulting "shared" data could be distributed freely. Unique patient identifiers were not required for treatment or outcome analysis. Age data were resolved to single-integer years, grouping patients aged > 89 years. Admission, discharge, treatment, and follow-up dates were replaced with enrollment year, and follow-up/outcome intervals calculated eliminating original data. Two additional data fields identified as PHI (treating physician and facility) were replaced with integer values, and the original data corresponding to these values were stored in the CK database. Use of the algorithm at the time of database design did not increase cost or design effort. CONCLUSIONS: The CK-SD model for clinical database design provides an algorithm for investigators to create, maintain, and share clinical research data compliant with HIPAA regulations. This model is applicable to new projects and large institutional datasets, and should decrease regulatory efforts required for conduct of clinical research. Application of the design algorithm early in the clinical research enterprise does not increase cost or the effort of data collection.

Algorithms↗
PubMedDate not supplied

Psychoneuroimmunology and health consequences: data and shared mechanisms.

There is evidence linking psychosocially mediated immunological alterations with cancer, infectious illness, and HIV progression. The data reviewed suggest that immune modulation by psychosocial stressors and/or interventions may importantly influence health status. The research literature also suggests that the impact of chronic stressors and psychosocial factors on sympathetic nervous system and endocrine function influences the immune system, thereby providing shared mechanisms that may impact on disease susceptibility and progression across a broad spectrum of disorders. A better understanding of individual vulnerability, such as occurs with aging, may help to pinpoint those at greatest risk.

Adult↗
PubMed2003

Neuroscience data and tool sharing: a legal and policy framework for neuroinformatics.

The requirements for neuroinformatics to make a significant impact on neuroscience are not simply technical--the hardware, software, and protocols for collaborative research--they also include the legal and policy frameworks within which projects operate. This is not least because the creation of large collaborative scientific databases amplifies the complicated interactions between proprietary, for-profit R&D and public "open science." In this paper, we draw on experiences from the field of genomics to examine some of the likely consequences of these interactions in neuroscience. Facilitating the widespread sharing of data and tools for neuroscientific research will accelerate the development of neuroinformatics. We propose approaches to overcome the cultural and legal barriers that have slowed these developments to date. We also draw on legal strategies employed by the Free Software community, in suggesting frameworks neuroinformatics might adopt to reinforce the role of public-science databases, and propose a mechanism for identifying and allowing "open science" uses for data whilst still permitting flexible licensing for secondary commercial research.

Computational Biology↗
PubMed1994

The utility of a multicenter regional trauma registry.

We report on the experience of five trauma receiving hospitals (four general hospitals and one spinal cord unit) in establishing a multicenter trauma registry (TR) for the purpose of data sharing. To ensure data comparability, all coders were oriented to standard data definitions and injury severity scaling. Coders and their physician sponsors met regularly to review data. Data presented for the four general hospitals from January through September 1992 address comparison of mortality rates, resource implications of isolated hip fractures, and the utility of knowing regional neurosurgical (NS) trauma volumes. Because of a statistically significant higher mortality rate at hospital 2, 7.2% versus 4.7% overall, mortality data were further characterized by patient age, mean ISS, and frequency of severe head injury. This still failed to explain the mortality difference. Hip fractures utilized 11,120 (26.3%) of the total 42,341 TR hospital days. Interhospital differences in median length of stay in this population suggest that greater resource efficiencies can be realized. Earlier questions about the value of including isolated hip fractures in the data set have been answered by understanding the resource implications of this population. Problems of NS coverage arising from a regional shortage of neurosurgeons can now be addressed with a better appreciation of the intraregional differences in NS volumes. Use of congruent data sets, combined with a collaborative approach, has stimulated the application of multicenter TR data to quality improvement, and utilization and regional planning issues.

Abbreviated Injury Scale↗
PubMed2026

PD GENEration: An International Parkinson's Disease Genetic Research Study.

BACKGROUND: PD GENEration (NCT04057794, NCT04994015), sponsored by the Parkinson's Foundation in partnership with Aligning Science Across Parkinson's (ASAP) through the Global Parkinson's Genetics Program (GP2), is an international, observational, clinical research study that offers genetic testing and counseling to people living with Parkinson's disease (PwP) at no financial cost. PD GENEration has aimed to empower PwP and their clinicians with knowledge of their genetic status, to accelerate recruitment into precision medicine trials, and to advance research through data sharing. Since its launch in 2019, the study has expanded to enroll over 32,000 PwP (as of March 31, 2026), from 10 countries across North, Central, and South America, the Caribbean, and Israel. METHODS: Over the course of 6 years, PD GENEration has evolved to accommodate the growing scientific and research needs of the Parkinson's community while also increasing the ability to return genetic test results to PwP at a greater scale. Participants with a diagnosis of Parkinson's disease (PD) may enroll in-person or virtually where informed consent and blood sample collection can occur. Samples are analyzed at a College of American Pathologists/Clinical Laboratory Improvement Amendments (CAP/CLIA)-certified laboratory using whole genome sequencing, with variants curated for a primary panel of seven PD-associated genes. Results are disclosed during a genetic counseling visit, where further testing is offered for two optional additional gene panels. Those who consent undergo analysis of additional genes, and results are returned during a genetic counseling visit for those that test positive for a variant. In addition to returning genetic results to PwP, a central pillar of the study design has been the open sharing of genomic data to advance discovery in PD research in partnership with ASAP and GP2. DISCUSSION: PD GENEration applies a flexible framework, allowing for country specific considerations and the integration of multiple site models, evolving based on participant needs and the prioritization of equity and accessibility. We summarize PD GENEration's implementation and scaling, highlight key accomplishments and lessons learned, and provide guidance for those interested in implementing large-scale clinical genetic testing studies across other diseases and therapeutic domains.

Parkinson&#x2019;s disease↗