An approach to using care pathway records for research.

Previously, we have examined the use of integrated care pathways, a fine-grained form of medical guideline including the explicit recording of any deviation, or 'variance', for research purposes. Feeding the results of the analysis of variance into the development of a pathway could be an effective way of capturing evidence from practice. Building on this concept, in our principal case study we propose a system for extracting data from integrated care pathways (ICPs) using ontologies and a method for inferring ICPs from other patient records, combining these with data collected for retrospective and prospective studies in preimplantation genetic diagnosis (PGD) for assisted reproduction.

Privacy aware access controls for medical data disclosure on European healthgrids.

To be processed within a healthgrid environment, medical data goes through a complete lifecycle and several stages until it is finally used for the primary reason it has been collected for. This stage is not always the final occurrence of when the data would have been manipulated. The data could rather continue to be needed for secondary purposes of legitimate or non legitimate nature. Although other privacy issues are related to the processing of patient data while it is residing on a healthgrid environment, the control of data disclosure is our primary interest. When sharing medical data between different Healthcare and biomedical research organizations in Europe, it is important that the different parties involved in the sharing handle the data in the same way indicated by the legislation of the member state where the data was originally collected as the requirements might differ from one state to another. Privacy requirements, such as patient consent, may be subject to conflicting conditions between different national frameworks as well as between different legal and ethical frameworks within a single member state. These circumstances have made the compliance management process in European healthgrid very challenging. In this paper we are presenting an approach to tackle these issues by relying on several technologies contained in the semantic web stack. Our work suggests a direct mapping from high level legislation on privacy and data protection to operational level privacy aware controls. Additionally we suggest an architecture for the enforcement of these controls on access control models adopted by healthgrids security infrastructures.

Hitting the ground running: Healthgrid deployment and adoption.

We consider the issues of healthgrid development, deployment and adoption in health care and research environments. While healthgrid technology could be deployed to support advanced medical research, we are not seeing its wide adoption. Understanding why this technology is not being exploited is one purpose of this paper. We do so in light of the seminal Healthgrid White Paper and the SHARE roadmap. We also address barriers to adoption and successes by presenting experiences in North America and Europe. By critically appraising where we are, we hope that we can hit the ground running in the near future.

Research traceability using provenance services for biomedical analysis.

We outline the approach being developed in the neuGRID project to use provenance management techniques for the purposes of capturing and preserving the provenance data that emerges in the specification and execution of workflows in biomedical analyses. In the neuGRID project a provenance service has been designed and implemented that is intended to capture, store, retrieve and reconstruct the workflow information needed to facilitate users in conducting user analyses. We describe the architecture of the neuGRID provenance service and discuss how the CRISTAL system from CERN is being adapted to address the requirements of the project and then consider how a generalised approach for provenance management could emerge for more generic application to the (Health)Grid community.

Variance analysis as practice-based evidence.

Integrated care pathways, a fine-grained form of medical guideline including the explicit recording of any deviation, or 'variance', have been perceived by some as overly prescriptive, limiting clinical freedom and promoting 'cookbook medicine'. However, feeding the results of the analysis of variance back into the development of a pathway could be an effective way of capturing evidence from practice. This paper summarizes research into the development and use of ICPs, and includes some initial findings from a qualitative study involving clinicians that have helped develop or have used ICPs professionally.

Modelling and enforcing privacy for medical data disclosure across Europe.

The harmonization of data protection legislation in Europe has been theoretically achieved by means of the EU directive on data protection. In practice the harmonization is not absolute and conflicts and inconsistencies continue to exist in the way Member States are implementing the directive. The integration of different European medical systems by means of grid technologies will continue to be challenging if technology does not intervene to enhance interoperability between national regulatory frameworks on data protection. In this paper we present an approach to automate privacy requirements for the sharing of patient data across Europe on a healthgrid domain and ensure its enforcement internally and within external domains where the data might travel. This approach is based on the semantic modelling of privacy obligations that are of legal, ethical or cultural nature. These requirements are for the sharing of personal data between different European Member States. Our model reflects both similarities and conflicts, if any, between the different Member States. This allows us to reason on the safeguards a data controller should ask from an organization belonging to another Member State before disclosing medical data to them. The system will also generate the relevant set of policies to be enforced at the process level of the grid to ensure privacy compliance before allowing access to the data.

Ontology-based privacy compliance on European healthgrid domains.

The harmonization of data protection law in Europe has been theoretically achieved by means of the EU directive on data protection [1]. In practice the harmonization is not absolute and conflicts continue to exist on the ways member states are implementing the directive. The integration of different European medical systems by means of grid technologies will continue to be challenging if technology does not intervene to enhance interoperability between national regulatory frameworks on data protection. In this paper we present an approach to automate privacy requirements for the sharing of patient data across Europe on a healthgrid [2] domain and ensure its enforcement internally and within external domains where the data might travel. This approach is based on the semantic modelling of privacy obligations that are of legal, ethical or cultural nature. These requirements are for the sharing of personal data between different European member states. Our model reflects both similarities and conflicts, if any, between the different member states. This will allow us to reason on the safeguards a data controller should ask from an organization belonging to another member state before disclosing medical data to them. The system will also generate the relevant set of policies to be enforced at the process level of the grid to ensure privacy compliance before allowing access to the data.

From HealthGrid to SHARE: a selective review of projects.

The SHARE project (Supporting and structuring Healthgrid Activities and Research in Europe) is an EC funded specific support action to define a roadmap for future healthgrid research, highlighting opportunities, obstacles and potential bottlenecks. The aim is identify technical, legal and ethical issues that would affect the wide deployment of healthgrids in the medical research community. The initial technical roadmap has proposed a series of technology, standards and deployment milestones, starting with the testing and development of a reference implementation of grid services, and ending with the deployment of a knowledge grid for medical research. In this paper we review a number of projects from pre-healthgrid to the second generation of healthgrid projects and retrospectively consider their achievements and issues in the light of the first SHARE technical road map.

Roadmap for a European healthgrid.

This paper proposes a 10-year roadmap to achieve the goal to offer to healthcare professionals an environment created through the sharing of resources, in which heterogeneous and dispersed health data as well as applications can be accessed by all users as a tailored information providing system according to their authorisation and without loss of information. The paper identifies milestones and presents short term objectives on the road to this healthgrid.

SHARE, from vision to road map: technical steps.

We present the 'HealthGrid' initiative and briefly review work carried out in various European healthgrid projects. We report on joint work with numerous European collaborators. Since the European Commission's Information Society Technologies programme funded the first gridbased health and medical projects, the HealthGrid movement has flourished in Europe. Many projects have now been completed and 'HealthGrid' consulted a number of experts to compile and publish a 'White Paper' which establishes the foundations, potential scope and prospects of an approach to health informatics based on a grid infrastructure. With a second generation of projects now funded, the EC has commissioned the SHARE Project, a study to define a research roadmap for a 'healthgrid for Europe' as the preferred infrastructure for medical and health care projects in the European Research Area. The project explores the ways in which the healthgrid approach supports modern trends both in research in biomedicine and in healthcare, such as evidence-based practice and information integration.

SHARE roadmap 1: towards a debate.

We present the 'HealthGrid' initiative and review work carried out in various European projects. Since the European Commission's Information Society Technologies programme funded the first grid-based health and medical projects, the HealthGrid movement has flourished in Europe. Many projects have now been completed and 'Healthgrid' consulted a number of experts to compile and publish a 'White Paper' which establishes the foundations, potential scope and prospects of an approach to health informatics based on a grid infrastructure. The White Paper demonstrates the ways in which the healthgrid approach supports many modern trends in medicine and healthcare, such as evidence-based practice, integration across levels, from molecules and cells, through tissues and organs to the whole person and community, and the promise of individualized health care. A second generation of projects have now been funded, and the EC has commissioned a study to define a research roadmap for a 'healthgrid for Europe', seen as the preferred infrastructure for medical and health care projects in the European Research Area.

Proposing a roadmap for HealthGrids.

With the regular progress of technology and infrastructures, a growing number of grid applications are developed and deployed for life science and medical research. At the last HealthGrid conference in April 2005 in Oxford, many groups described successful usage of grids for compute intensive calculations. Very large scale deployment of a biomedical application in the area of drug discovery has been achieved on EGEE during 2005. On the other hand, beside a few pioneers, very few data grids have been deployed so far and knowledge grids are still at a conceptual level. This situation is expected to evolve quickly as many projects are focussed on developing data management services and knowledge management tools relevant to biomedical sciences. At this stage, it is important to identify the potential bottlenecks and to define a roadmap for the wide adoption of grids for healthcare. This article presents an analysis of the present adoption of grids for biomedical sciences and healthcare in Europe: it identifies bottlenecks and proposes actions that will be further assessed within the framework of the SHARE European project dedicated to the definition of a roadmap for HealthGrids.

Final results and exploitation plans for MammoGrid.

The MammoGrid project has delivered the first deployed instance of a healthgrid for clinical mammography that spans national boundaries. During the last year, the final MammoGrid prototype has undergone a series of rigorous tests undertaken by radiologists in the UK and Italy and this paper draws conclusions from those tests for the benefit of the Healthgrid community. In addition, lessons learned during the lifetime of the project are detailed and recommendations drawn for future health applications using grids. Following the completion of the project, plans have been put in place for the commercialisation of the MammoGrid system and this is also reported in this article. Particular emphasis is placed on the issues surrounding the transition from collaborative research project to a marketable product. This paper concludes by highlighting some of the potential areas of future development and research.

Obstructive Sleep Apnea: Preoperative Screening and Postoperative Care.

The incidence of obstructive sleep apnea (OSA) has reached epidemic proportions, and it is an often unrecognized cause of perioperative morbidity and mortality. Profound hypoxic injury from apnea during the postoperative period is often misdiagnosed as cardiac arrest due to other causes. Almost a quarter of patients entering a hospital for elective surgery have OSA, and >80% of these cases are undiagnosed at the time of surgery. The perioperative period puts patients at high risk of apneic episodes because of drug effects from sedatives, narcotics, and general anesthesia, as well as from the effects of postoperative rapid eye movement sleep changes and postoperative positioning in the hospital bed. For adults, preoperative screening using the STOP or STOP-Bang questionnaires can help to identify adult patients at increased risk of OSA. In the pediatric setting, a question about snoring should be part of every preoperative examination. For patients with known OSA, continuous positive airway pressure should be continued postoperatively. Continuous pulse oximetry monitoring with an alarm system can help to prevent apneic catastrophes caused by OSA in the postoperative period.

Deployment of a grid-based medical imaging application.

The MammoGrid project has deployed its Service-Oriented Architecture (SOA)-based Grid application in a real environment comprising actual participating hospitals. The resultant setup is currently being exploited to conduct rigorous in-house tests in the first phase before handing over the setup to the actual clinicians to get their feedback. This paper elaborates the deployment details and the experiences acquired during this phase of the project. Finally the strategy regarding migration to an upcoming middleware from EGEE project will be described. This paper concludes by highlighting some of the potential areas of future work.

The Healthgrid White Paper.

Over the last four years, a community of researchers working on Grid and High Performance Computing technologies started discussing the barriers and opportunities that grid technologies must face and exploit for the development of health-related applications. This interest lead to the first Healthgrid conference, held in Lyon, France, on January 16th-17th, 2003, with the focus of creating increased awareness about the possibilities and advantages linked to the deployment of grid technologies in health, ultimately targeting the creation of a European/international grid infrastructure for health. The topics of this conference converged with the position of the eHealth division of the European Commission, whose mandate from the Lisbon Meeting was "To develop an intelligent environment that enables ubiquitous management of citizens' health status, and to assist health professionals in coping with some major challenges, risk management and the integration into clinical practice of advances in health knowledge." In this context "Health" involves not only clinical procedures but covers the whole range of information from molecular level (genetic and proteomic information) over cells and tissues, to the individual and finally the population level (social healthcare). Grid technology offers the opportunity to create a common working backbone for all different members of this large "health family" and will hopefully lead to an increased awareness and interoperability among disciplines. The first HealthGrid conference led to the creation of the Healthgrid association, a non-profit research association legally incorporated in France but formed from the broad community of European researchers and institutions sharing expertise in health grids. After the second Healthgrid conference, held in Clermont-Ferrand on January 29th-30th, 2004, the need for a "white paper" on the current status and prospective of health grids was raised. Over fifty experts from different areas of grid technologies, eHealth applications and the medical world were invited to contribute to the preparation of this document.

MammoGrid: large-scale distributed mammogram analysis.

Breast cancer as a medical condition and mammograms as images exhibit many dimensions of variability across the population. Similarly, the way diagnostic systems are used and maintained by clinicians varies between imaging centres and breast screening programmes, and so does the appearance of the mammograms generated. A distributed database that reflects the spread of pathologies across the population is an invaluable tool for the epidemiologist and the understanding of the variation in image acquisition protocols is essential to a radiologist in a screening programme. Exploiting emerging grid technology, the aim of the MammoGrid [1] project is to develop a Europe-wide database of mammograms that will be used to investigate a set of important healthcare applications and to explore the potential of the grid to support effective co-working between healthcare professionals.

An automatic female pelvic medicine and reconstructive surgery registry and complications manager developed in an electronic medical record.

OBJECTIVES: The aim of this study is to incorporate a structured clinical documentation system (SCDS) into the electronic medical record (EMR), allowing for automatic flow of clinical data into an enterprise data warehouse (EDW) and clinical registry. METHODS: The SCDS programming was developed within inpatient and ambulatory EMR domains, allowing routine documentation in these settings to trigger data flow into an EDW. An extensive set of clinical outcomes was included, focusing on data points likely to exist in the forthcoming American Urogynecologic Society Pelvic Floor Disorders Registry. An electronic complications manager was developed to link immediate and/or delayed complications to the index surgery, allowing for accurate morbidity tracking. RESULTS: All aspects of EMR documentation were successfully reconfigured for charting in both inpatient and office settings. Clinicians transitioned to clinical documentation such that no additional data entry beyond routine charting was required, and this resulted in data flow into the EDW. Physician feedback led to the refinement of SCDS entry fields. CONCLUSIONS: This SCDS system allows for automatic flow of a comprehensive data set from our EMR into an EDW and registry. It also provides the ability to systematically track complications and longitudinal clinical outcomes. Integrated systems may eliminate barriers associated with free-standing registries including those relating to cost, maintenance, data integrity, and consistent clinician participation. In addition, it should improve ascertainment of a complete patient population in comparison to voluntary registries.

Privacy compliance and enforcement on European healthgrids: an approach through ontology.

The sharing of medical data between different healthcare organizations in Europe must comply with the legislation of the Member State where the data were originally collected. These legal requirements may differ from one state to another. Privacy requirements such as patient consent may be subject to conflicting conditions between different national frameworks as well as between different legal and ethical frameworks within a single Member State. These circumstances have made the compliance management process in European healthgrids very challenging. In this paper, we present an approach to tackle these issues by relying on several technologies in the semantic Web stack. Our work suggests a direct mapping from high-level legislation on privacy and data protection to operational-level privacy-aware controls. Additionally, we suggest an architecture for the enforcement of these controls on access control models adopted in healthgrid security infrastructures.