Summary Background: Privacy, ethics, and data access issues pose significant challenges to the timely delivery of health research. Whilst the fundamental drivers to ensure that data access is ethical and satisfies privacy requirements are similar, they are often dealt with in varying ways by different approval processes. Objective: To achieve a consensus across an international panel of health care and informatics professionals on an integrated set of privacy and ethics principles that could accelerate health data access in data-driven health research projects. Method: A three-round consensus development process was used. In round one, we developed a baseline framework for privacy, ethics, and data access based on a review of existing literature in the health, informatics, and policy domains. This was further developed using a two-round Delphi consensus building process involving 20 experts who were members of the International Medical Informatics Association (IMIA) and European Federation of Medical Informatics (EFMI) Primary Health Care Informatics Working Groups. To achieve consensus we required an extended Delphi process. Results: The first round involved feedback on and development of the baseline framework. This consisted of four components: (1) ethical principles, (2) ethical guidance questions, (3) privacy and data access principles, and (4) privacy and data access guidance questions. Round two developed consensus in key areas of the revised framework, allowing the building of a newly, more detailed and descriptive framework. In the final round panel experts expressed their opinions, either as agreements or disagreements, on the ethics and privacy statements of the framework finding some of the previous round disagreements to be surprising in view of established ethical principles. Conclusion: This study develops a framework for an integrated approach to ethics and privacy. Privacy breech risk should not be considered in isolation but instead balanced by potential ethical benefit.

PDC is a practical, useful and relevant indicator of effective patient-doctor communication. A well-presented summary of existing levels of PDC is an effective intervention to improve PDC and, by inference, patient-doctor communication on health problems and treatments. PDC should also be examined and reported in prevalence and incidence studies based on patient's reports and doctor's records.

The objective of this study was to describe the attitudes of general practitioners (GPs) and their patients to patient-held health records (PHR). The study was set in a general practice in South Australia. It consisted of a descriptive study using a mail questionnaire. A stratified random sample, based on socioeconomic indicators for areas in South Australia, of GPs (n = 315) and their patients (n = 500) was used. The indices for contents, problems and benefits of the PHR showed adequate internal consistency and reliability. Patients mostly perceived the PHR as a personal document for reference while GPs perceived it as a management and communication tool. The solo GP who scored high on the 'PHR benefits' and low on the 'PHR problems' indices, and doubted that GPs were influential in changing patient behaviour would let patients keep full copies of their records. The younger female rural GP who scored high on the 'PHR benefits' and low on the 'PHR problems' indices favoured a patient summary. The more entrepreneurial GPs who scored high on both the 'PHR benefits' and 'PHR problems' indices favoured a 'censored summary'. Awareness of smart cards was high and opinions on their use guarded. It was concluded that patients and doctors have different attitudes to and expectations of PHRs. Significant sociodemographic, educational and attitude correlations with PHRs were found. The 'PHR benefits' and 'PHR problems' indices were consistent, useful and may have a wider applicability in quantifying the opinion of patients and providers before implementing PHR programmes.

SummaryBackground: Most chronic diseases are managed in primary and ambulatory care. The chronic care model (CCM) suggests a wide range of community, technological, team and patient factors contribute to effective chronic disease management. Ontologies have the capability to enable formalised linkage of heterogeneous data sources as might be found across the elements of the CCM. Objective: To describe the evidence base for using ontologies and other semantic integration methods to support chronic disease management. Method: We reviewed the evidence-base for the use of ontologies and other semantic integration methods within and across the elements of the CCM. We report them using a realist review describing the context in which the mechanism was applied, and any outcome measures. Results: Most evidence was descriptive with an almost complete absence of empirical research and important gaps in the evidence-base. We found some use of ontologies and semantic integration methods for community support of the medical home and for care in the community. Ubiquitous information technology (IT) and other IT tools were deployed to support self-management support, use of shared registries, health behavioural models and knowledge discovery tools to improve delivery system design. Data quality issues restricted the use of clinical data; however there was an increased use of interoperable data and health system integration. Conclusions: Ontologies and semantic integration methods are emergent with limited evidence-base for their implementation. However, they have the potential to integrate the disparate community wide data sources to provide the information necessary for effective chronic disease management.

SummaryBackground: Primary care delivers patient-centred and coordinated care, which should be quality-assured. Much of family practice now routinely uses computerised medical record (CMR) systems, these systems being linked at varying levels to laboratories and other care providers. CMR systems have the potential to support care. Objective: To achieve a consensus among an international panel of health care professionals and informatics experts about the role of informatics in the delivery of patient-centred, coordinated, and quality-assured care. Method: The consensus building exercise involved 20 individuals, five general practitioners and 15 informatics academics, members of the International Medical Informatics Association Primary Care Informatics Working Group. A thematic analysis of the literature was carried out according to the defined themes. Results:The first round of the analysis developed 27 statements on how the CMR, or any other information system, including paper-based medical records, supports care delivery. Round 2 aimed at achieving a consensus about the statements of round one. Round 3 stated that there was an agreement on informatics principles and structures that should be put in place. However, there was a disagreement about the processes involved in the implementation, and about the clinical interaction with the systems after the implementation. Conclusions: The panel had a strong agreement about the core concepts and structures that should be put in place to support high quality care. However, this agreement evaporated over statements related to implementation. These findings reflect literature and personal experiences: whilst there is consensus about how informatics structures and processes support good quality care, implementation is difficult.