Revealing the Nature of Chronic Obstructive Pulmonary Disease Using Self-tracking and Analysis of Contact Patterns: Longitudinal Study.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death and is characterized by a progressive loss of pulmonary function over time with intermittent episodes of exacerbations. Rapid and proactive interventions may reduce the burden of the condition for the patients. Telehealth solutions involving self-tracking of vital parameters such as pulmonary function, oxygen saturation, heart rate, and temperature with synchronous communication of health data may become a powerful solution as they enable health care professionals to react with a proactive and adequate response. We have taken this idea to the next level in the Epital Care Model and organized a person-centered technology-assisted ecosystem to provide health services to COPD patients. OBJECTIVE: The objective is to reveal the nature of COPD by combining technology with a person-centered design aimed to benefit from interactions based on patient-reported outcome data and to assess the needed kind of contacts to best treat exacerbations. We wanted to know the following: (1) What are the incidences of mild, moderate, and severe exacerbations in a mixed population of COPD patients? (2) What are the courses of mild, moderate, and severe exacerbations? And (3) How is the activity and pattern of contacts with health professionals related to the participant conditions? METHODS: Participants were recruited by convenience sampling from November 2013 to December 2015. The participants' sex, age, forced expiratory volume during the first second, pulse rate, and oxygen saturation were registered at entry. During the study, we registered number of days, number of exacerbations, and number of contact notes coded into care and treatment notes. Each participant was classified according to GOLD I-IV and risk factor group A-D. Participants reported their clinical status using a tablet by answering 4 questions and sending 3 semiautomated measurements. RESULTS: Of the 87 participants, 11 were in risk factor group A, 24 in B, 13 in C, and 39 in D. The number of observed days was 31,801 days with 12,470 measurements, 1397 care notes, and 1704 treatment notes. A total of 254 exacerbations were treated and only 18 caused hospitalization. Those in risk factor group D had the highest number of hospitalizations (16), exacerbations (151), and contacts (1910). The initial contacts during the first month declined within 3 months to one-third for care contacts and one-half for treatment contacts and reached a plateau after 4 months. CONCLUSIONS: The majority of COPD patients in risk factor group D can be managed virtually, and only 13% of those with severe exacerbations required hospitalization. Contact to the health care professionals decreases markedly within the first months after enrollment. These results provide a new and detailed insight into the course of COPD. We propose a resilience index for virtual clinical management making it easier to compare results across settings.

Relationship Between Patient-Reported Outcome Measures and the Severity of Chronic Obstructive Pulmonary Disease in the Context of an Innovative Digitally Supported 24-Hour Service: Longitudinal Study.

BACKGROUND: Individuals with chronic obstructive pulmonary disease (COPD) live with the burden of a progressive life-threatening condition that is often accompanied by anxiety and depression. The severity of the condition is usually considered from a clinical perspective and characterized according to the Global Initiative for Chronic Obstructive Lung Disease (GOLD) classification of severity (1-4) and a risk assessment (A through D) that focuses on the patient's symptoms and number of exacerbations, but information about perceived health or ability to manage the condition are rarely included. OBJECTIVE: We evaluated 3 patient-reported outcome measurements (PROMs) to examine how these can be used to report on individuals with COPD who were supported by a digitally assisted intervention that aims to increase the patient's management of their condition to improve their well-being. METHODS: A total of 93 individuals with COPD were enrolled. At baseline and after 6 and 12 months, we measured self-reported self-management (Health Education Impact Questionnaire, heiQ) and health literacy (Health Literacy Questionnaire, HLQ), and physical and mental health (Short Form-36, SF-36) PROMs were collected. The scores of the 19 PROM dimensions were related to COPD severity, that is, GOLD risk assessment, pulmonary function at entry, and number of exacerbations of a period up to 12 months. The initial PROM scores were also compared with pulmonary function, exacerbations, and GOLD risk assessment to predict the number of contacts within the first 90 days. RESULTS: At baseline, 2 dimensions from heiQ and SF-36 Physical health differed significantly between GOLD risk factor groups, indicating more distress and poorer attitudes and health status with increasing severity (GOLD risk assessment). Pulmonary function (FEV1) was negatively associated with the severity of the condition. After 6 months, we observed an increase in heiQ6 (skill and technique acquisition) and a reduction in emotional distress. The latter effect persisted after 12 months, where heiQ4 (self-monitoring and insight) also increased. HLQ3 (actively managing my health) decreased after 6 and 12 months. The number of exacerbations and the GOLD risk factor assessment predicted the number of contacts during the first 90 days. Furthermore, 2 of the PROMS heiQ6 (skill and technique acquisition) and HLQ8 (ability to find good health information) evaluated at baseline were associated with the number of contacts within the first 90 after enrollment. The pulmonary function was not associated with the number of contacts. CONCLUSIONS: Our data suggest that selected dimensions from HLQ, heiQ, and SF-36 can be used as PROMs in relation to COPD to provide researchers and clinicians with greater insight into how this condition affects individuals' ability to understand and manage their condition and perception of their physical and mental health. The PROMs add to the information obtained with the clinical characteristics including the GOLD risk factor assessment. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.6506.

Benefits of a clinical planning and coordination module: a simulation study.

Digital Clinical Practice Guidelines are commonly used in Danish health care. Planning and decision support are particularly important to patients with chronic diseases, who often are in contact with General Practitioners, Community Nurses and hospitals. In the Capital Region of Denmark the potential benefits of a planning and coordination module has been assessed in a full-scale simulation test including 18 health care professionals. The results showed that health care professionals can benefit from such a module. Furthermore unexpected new possible benefits concerning communication and quality management emerged during the test and potential new groups of users were identified.

Next Generation EHRs - What Problems Are These Systems Aiming to Solve?

EHRs elicit an array of different aspirations all underpinned by the widely held conviction that they can deliver benefits for patients, clinicians, researchers, IT vendors, policy-makers and society as a whole. While techno-centric visions abound, reflection on their history, the challenges evident in their design, implementation and evaluation and the limited evidence of their beneficial impacts over time is instructive. From a socio-technical perspective EHRs appear to be a set of 'wicked problems' unlikely to be resolved in favor of one position or another, but rather requiring judgement, nuance and negotiation around the kinds of problems we want these systems to solve. This paper presents some perspectives on important potential features for next generation EHRs and on the types of problems that these systems could aspire to solve. The focus is not on prediction but rather on actively shaping the kind of future that we desire and how EHRs will support its achievement.

Diffusion of electronic health records--six years of empirical data.

The Danish EHR-Observatory has monitored Danish EHR projects since 2000 with respect to a number of parameters such as diffusion, diffusion rate and the hospital owners expectations. On the basis of the data and a model for technology diffusion three scenarios for future diffusion are built. The results show that the national goal to have EHRs fully implemented in hospitals by 2008 will not be reached. The scenarios built from empirical data provide a useful benchmarking tool for planning and evaluating the EHR implementation programs in hospitals.

The Epital Care Model: A New Person-Centered Model of Technology-Enabled Integrated Care for People With Long Term Conditions.

BACKGROUND: There is worldwide recognition that the future provision of health care requires a reorganization of provision of care, with increased empowerment and engagement of patients, along with skilled health professionals delivering services that are coordinated across sectors and organizations that provide health care. Technology may be a way to enable the creation of a coherent, cocreative, person-centered method to provide health care for individuals with one or more long-term conditions (LTCs). It remains to be determined how a new care model can be introduced that supports the intentions of the World Health Organization (WHO) to have integrated people-centered care. OBJECTIVE: To design, pilot, and test feasibility of a model of health care for people with LTCs based on a cocreative, iterative, and stepwise process in a way that recognizes the need for person-centered care, and embraces the use of digital technology. METHODS: The overall research method was inspired by action research and used an agile, iterative approach. In 2012, a living lab was established in a Danish municipality which allowed for the freedom of redesigning health care processes. As the first step, a wide group of stakeholders was gathered to create a layout for the reorganization of services and development of technology, based on established principles for innovative management of people with chronic conditions. The next three steps were (1) a proof of concept in 2012, (2) a pilot study, and (3) a feasibility study from 2013 to 2015, in which a total of 93 chronic obstructive pulmonary disease (COPD) patients were enrolled. Citizens were provided a tablet-based solution for remote follow-up and communication purposes, and access to a 24/7 response and coordination center that coordinated both virtual and face-to-face support for COPD management. In step five the initial model was extended with elements that support continuity of care. Beginning in the autumn of 2013, 1102 frail elderly individuals were included and offered two additional services: an outgoing acute medical team and a local subacute bed function. RESULTS: Based on the findings from the iterative process, and evolving technology and workflow solutions, we propose a robust and feasible model that can provide a framework for developing solutions to support an active life with one or more LTCs. The resulting Epital Care Model (ECM) consists of six stages, and serves as a template for how a digitally-enhanced health service can be provided based on patients' medical needs. The model is designed to be a proactive, preventive, and monitoring health care system that involves individuals in the management of their own health conditions. CONCLUSIONS: The ECM is in accordance with WHO's framework for integrated people-centered health services, and may serve as a framework for the development of new technologies and provide a template for future reorganization.

A method for specification of structured clinical content in electronic health records.

The Copenhagen County is using clinical guidelines in the electronic health record development to provide documentation support, process support and decision support for the healthcare professionals. The electronic health record development is based on three main components: The first component is a national information model. The second component is a common classification system (SNOMED). The third key component is the so-called "clinical content". This paper describes the structured "clinical content", how it is linked to the clinical process, and how it is used to create clinical guidelines in the form of standard care plans. The Copenhagen County and MEDIQ has developed a methodology for identifying and specifying structured "clinical content" to be used in electronic health records. The method combines analyses of national clinical guidelines with local experience and practices and it heavily involves healthcare professionals. The method includes four main steps: Analyses of background material, analyses of clinical process-flow, mapping to standards (the national information model and the common classification system), and specification of the structured clinical content itself. Three secondary steps may be added to specify the clinical content in more detail: Workflow analyses, analyses of quality indicators, and decision analyses. This paper reports the experiences using the method and stresses the demand for a common exchange format and IT-tools for documenting clinical content in a formalised way.

Modelling and implementing electronic health records in Denmark.

The Danish Health IT strategy [Danish Ministry of Interior and Health, National Strategy for IT in the Health Sector 2003-2007, Copenhagen, 2003 (in Danish). http://www.im.dk/publikationer/itstrategi/itstrategi.pdf. notes that integration between electronic health records (EHR) systems has a high priority. A prerequisite for real integration and semantic interoperability is agreement of the data content and the information models. The National Board of Health is working on a common model for EHR, and its adoption is now being promoted through pilot projects. At the same time, several development and implementation projects are taking place at a regional level. These EHRs are built on information models from different vendors and are based on different integration platforms. The Danish EHR observatory, which has been monitoring the development of EHRs in Denmark since 1998, has analysed the challenges of using different information models and integration platforms. This paper also maps the development in Denmark to the new paradigms in modelling techniques and integration technology.

Development, implementation and diffusion of EHR systems in Denmark.

The Danish EHR-Observatory has monitored Danish EHR projects for several years with respect to a number of parameters such as diffusion, diffusion rate, barriers and limitations, and experience gained. The results of the 2002 monitoring reveal that investment in IT is relatively low and the diffusion rate is below the estimated level. The EHR projects gain a lot of valuable experience, but the coordination of evaluation results should be improved.

A comparative study of EPR projects in Denmark.

The EPR-Observatory--a public funded project organization--has monitored Danish EPR-projects with respect to various parameters such as diffusion and diffusion rate, barriers and limitations, experience gained. Furthermore, the Observatory has aggregated and disseminated the results and has established a constructive dialogue between the Danish EPR projects. The Observatory has also focused in the later years on analysis of common frames of reference for EPR systems. The National Board of Health and some of the larger counties have developed such frames. First generation systems have been implemented in a few counties with moderate coverage, but a number of projects developing second generation systems are making progress, and the market situation is quickly maturing. There are still, however, major problems in the practical implementation of the systems.

Modelling and implementing electronic health records in Denmark.

The Danish Health IT strategy [1] points out that integration between electronic health records (EHR) systems has a high priority. A prerequisite for real integration and semantic interoperability is agreement of the data content and the information models. The National Board of Health is working on a common model for EHR, but it is not yet fully developed. At the same time several development and implementation projects are taking place at a regional level. These EHRs are built on information models from different vendors and are based on different integration platforms. The Danish EHR observatory, which has been monitoring the development of EHRs in Denmark since 1998, have analysed the challenges of using different information models and integration platforms. This paper also reports new tendencies in modelling and integration platforms globally and how this is reflected in the National development.

Monitoring the development and diffusion of EHR systems in Denmark.

The Danish EHR Observatory has monitored Danish EHR projects for several years with respect to a number of parameters such as diffusion, diffusion rate, barriers and limitations, and experience gained. The results of the 2002 monitoring reveal that investment in IT is relatively low and the diffusion rate is below the estimated level. The EHR projects gain a lot of valuable experience, but the coordination of evaluation results should be improved.

[IT systems for clinical databases--status and perspectives]. / It-systemer til kliniske kvalitetsdatabaser--status og perspektiver.

Generally, the use of clinical databases for quality development in the hospital sector has not been satisfactory. A substantial problem attaches to the IT systems used hitherto. This article describes a number of requirements which the National Indicator Project has specified for a forthcoming second generation of clinical database system. Besides, the second generation system Clinical Performance Measurements which is used in the Copenhagen Hospital Corporation for several disease areas and for The Danish Vascular Registry is described. This experience emphasizes the need for central management of development initiatives within clinical quality databases. The management must allow for coordination, rational management and experience-based further development of IT systems for the clinical databases and integration with present and forthcoming systems including electronic patient record systems. The management should also allow for the decisive interaction between clinical quality development and medical informatics.

Quality labelling and certification of electronic health record systems.

The Danish Health IT strategy 2003-2007 demands implementation of Electronic Health Records (EHR) in all Hospitals based on common standards. The aim is to achieve integration and semantic interoperability between different EHR systems in order to support a better communication and coherence between the health care parties. The National Board of Health has developed a common model, which is a prerequisite for the development and implementation of interoperable EHR systems. The adoption of the common EHR model has been promoted and validated through a number of pilot projects in different Hospitals. The Danish EHR Observatory, which has been monitoring the development of EHR in Denmark since 1998, have developed a methodology for Quality labelling and certification of EHR systems. The methodology for certification of EHR systems has been used to validate EHR systems from different vendors to document to which extent the systems are based on the national requirements for EHR.