Search

Background: Heart failure (HF) is a common condition affecting more than 10% of those over 70 years of age. Reliable estimates of survival following a diagnosis of HF are important to guide management and facilitate advanced care planning. Most existing research has focused on survival rates for patients admitted to hospital with acute HF. However, the majority of patients with HF are diagnosed in the outpatient setting and can have periods of sustained symptom stability in the chronic phase of their illness. There has not been a systematic review of the literature to determine the prognosis of patients with chronic HF in the community., Methods: We will undertake a comprehensive search of the following databases: CINAHL, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and the Clinical Trials Register ( clinicaltrials.gov ). Two reviewers will independently complete screening, data extraction and quality appraisal with the option of input from a third reviewer to arbitrate. We will include data from observational or database studies conducted in either community or outpatient settings. Studies of acute HF or specific subgroups of patients will be excluded. There is no restriction by geographical setting, publication language or study date. We will complete QUIPS and GRADE assessments to systematically appraise the quality of evidence within and between studies. Where possible, we will seek to pool results to conduct a meta-analysis and undertake relevant subgroup analysis including by study setting, participant age and study decade. The primary outcome will be survival time from diagnosis. The secondary outcomes will be HF-related hospital admissions, symptom burden and measures of morbidity., Discussion: This systematic review will provide up to date evidence on the current survival rates and prognostic indicators for patients with chronic HF. We will put this into historical perspective, comparing outcomes across time to help understand the impact of advances in evidence-based treatment on average survival. This information is important in facilitating informed decision-making for patients and health professionals as well as highlighting areas to focus resources and improve public health planning., Systematic Review Registration: PROSPERO 2017 CRD42017075680.

Purpose: The principal goal of the electronic Primary Care Research Network (ePCRN) is to enable the development of an electronic infrastructure to support clinical research activities in primary care practice-based research networks (PBRNs). We describe the model that the ePCRN developed to enhance the growth and to expand the reach of PBRN research., Methods: Use cases and activity diagrams were developed from interviews with key informants from 11 PBRNs from the United States and United Kingdom. Discrete functions were identified and aggregated into logical components. Interaction diagrams were created, and an overall composite diagram was constructed describing the proposed software behavior. Software for each component was written and aggregated, and the resulting prototype application was pilot tested for feasibility. A practical model was then created by separating application activities into distinct software packages based on existing PBRN business rules, hardware requirements, network requirements, and security concerns., Results: We present an information architecture that provides for essential interactions, activities, data flows, and structural elements necessary for providing support for PBRN translational research activities. The model describes research information exchange between investigators and clusters of independent data sites supported by a contracted research director. The model was designed to support recruitment for clinical trials, collection of aggregated anonymous data, and retrieval of identifiable data from previously consented patients across hundreds of practices., Conclusions: The proposed model advances our understanding of the fundamental roles and activities of PBRNs and defines the information exchange commonly used by PBRNs to successfully engage community health care clinicians in translational research activities. By describing the network architecture in a language familiar to that used by software developers, the model provides an important foundation for the development of electronic support for essential PBRN research activities.

In the United Kingdom (UK), local initiatives have started to federate electronic healthcare records from different primary care clinical systems, mainly for the purposes of ensuring that health care services effectively meet the needs of the population. The use of such information is being investigated for clinical research, notably in patient cohort identification and recruitment. To achieve these aims, it is essential that the information from different systems can be searched from a single interface. While interoperability is a widely researched topic, interoperable methods and data sources in primary care are largely missing. This paper describes our approach to enabling primary care data in England to be searchable on a platform developed for performing large national collaborative primary care research studies throughout the United States.