A State-of-the Art Review of SNOMED CT Terminology Binding and Recommendations for Practice and Research.

BACKGROUND: Unambiguous sharing of data requires information models and terminology in combination, but there is a lack of knowledge as to how they should be combined, leading to impaired interoperability. OBJECTIVES: To facilitate creation of guidelines for SNOMED CT terminology binding we have performed a literature review to find existing recommendations and expose knowledge gaps. The primary audience is practitioners and researchers working with terminology binding. METHODS: PubMed, Scopus, and Web of Science were searched for papers containing "terminology binding," "subset," "map," "information model" or "implement" and the term "SNOMED." RESULTS: The search yielded 616 unique papers published from 2004 to 2020, from which 55 papers were selected and analyzed inductively. Topics described in the papers include problems related to input material, SNOMED CT, information models, and lack of appropriate tools as well as recommendations regarding competence. CONCLUSION: Recommendations are given for practitioners and researchers. Many of the stated problems can be solved by better co-operation between domain experts and informaticians and better knowledge of SNOMED CT. Settings where these competences either work together or where staff with knowledge of both act as brokers are well equipped for terminology binding. Tooling is not thoroughly researched and might be a possible way to facilitate terminology binding.

Patients and Professionals as Partners in Hypertension Care: Qualitative Substudy of a Randomized Controlled Trial Using an Interactive Web-Based System Via Mobile Phone.

BACKGROUND: The use of technology has the potential to support the patient´s active participation regarding treatment of hypertension. This might lead to changes in the roles of the patient and health care professional and affect the partnership between them. OBJECTIVE: The aim of this qualitative study was to explore the partnership between patients and health care professionals and the roles of patients and professionals in hypertension management when using an interactive web-based system for self-management of hypertension via the patient's own mobile phone. METHODS: Focus group interviews were conducted with 22 patients and 15 professionals participating in a randomized controlled trial in Sweden aimed at lowering blood pressure (BP) using an interactive web-based system via mobile phones. The interviews were audiorecorded and transcribed and analyzed using thematic analysis. RESULTS: Three themes were identified: the technology, the patient, and the professional. The technology enabled documentation of BP treatment, mainly for sharing knowledge between the patient and the professional. The patients gained increased knowledge of BP values and their relation to daily activities and treatment. They were able to narrate about their BP treatment and take a greater responsibility, inspired by new insights and motivation for lifestyle changes. Based on the patient's understanding of hypertension, professionals could use the system as an educational tool and some found new ways of communicating BP treatment with patients. Some reservations were raised about using the system, that it might be too time-consuming to function in clinical practice and that too much measuring could result in stress for the patient and an increased workload for the professionals. In addition, not all professionals and patients had adopted the instructions regarding the use of the system, resulting in less realization of its potential. CONCLUSIONS: The use of the system led to the patients taking on a more active role in their BP treatment, becoming more of an expert of their BP. When using the system as intended, the professionals experienced it as a useful resource for communication regarding BP and lifestyle. Patients and professionals described a consultation on more equal grounds. The use of technology in hypertension management can promote a constructive and person-centered partnership between patient and professional. However, implementation of a new way of working should bring benefits and not be considered a burden for the professionals. To establish a successful partnership, both the patient and the professional need to be motivated toward a new way of working. TRIAL REGISTRATION: ClinicalTrials.gov NCT03554382; https://clinicaltrials.gov/ct2/show/NCT03554382.

PERson-centredness in hypertension management using information technology (PERHIT): a protocol for a randomised controlled trial in primary health care.

Purpose: For primary health care (PHC), hypertension is the number one diagnosis for planned health care visits. The treatment of high blood pressure (BP) and its consequences constitutes a substantial economic burden. In spite of efficient antihypertensive medications, a low percentage of patients reach a well-controlled BP. The PERson-centredness in Hypertension management using Information Technology (PERHIT) Study is a multicentre randomised controlled trial. PERHIT is designed to evaluate the effect of supporting self-management on systolic blood pressure by the use of information technology in Swedish primary health care.Materials and Methods: After inclusion, 900 patients from 36 PHC centres are randomised to two groups. In the intervention group, patients are provided with a self-management support system including a home-BP monitor and further requested to perform self-reports and measure BP every evening for eight consecutive weeks. In the control group, patients receive treatment as usual.Results: The primary outcome will be the change in systolic blood pressure in patients with hypertension. In addition, person-centredness, daily life activities, awareness of risk and health care costs will also be evaluated.Conclusion: The results of this randomised controlled trial with assessment of blood pressure and same-day self-reports will provide patients a tool to understand the interplay between blood pressure and lifestyle applicable to primary health care. The self-management support system may be of importance for improved adherence to treatment and persistence to treatment recommendations.

Web-Based Intervention for Women With Type 1 Diabetes in Pregnancy and Early Motherhood: Critical Analysis of Adherence to Technological Elements and Study Design.

BACKGROUND: Numerous Web-based interventions have been implemented to promote health and health-related behaviors in persons with chronic conditions. Using randomized controlled trials to evaluate such interventions creates a range of challenges, which in turn can influence the study outcome. Applying a critical perspective when evaluating Web-based health interventions is important. OBJECTIVE: The objective of this study was to critically analyze and discuss the challenges of conducting a Web-based health intervention as a randomized controlled trial. METHOD: The MODIAB-Web study was critically examined using an exploratory case study methodology and the framework for analysis offered through the Persuasive Systems Design model. Focus was on technology, study design, and Web-based support usage, with special focus on the forum for peer support. Descriptive statistics and qualitative content analysis were used. RESULTS: The persuasive content and technological elements in the design of the randomized controlled trial included all four categories of the Persuasive Systems Design model, but not all design principles were implemented. The study duration was extended to a period of four and a half years. Of 81 active participants in the intervention group, a maximum of 36 women were simultaneously active. User adherence varied greatly with a median of 91 individual log-ins. The forum for peer support was used by 63 participants. Although only about one-third of the participants interacted in the forum, there was a fairly rich exchange of experiences and advice between them. Thus, adherence in terms of social interactions was negatively affected by limited active participation due to prolonged recruitment process and randomization effects. Lessons learned from this critical analysis are that technology and study design matter and might mutually influence each other. In Web-based interventions, the use of design theories enables utilization of the full potential of technology and promotes adherence. The randomization element in a randomized controlled trial design can become a barrier to achieving a critical mass of user interactions in Web-based interventions, especially when social support is included. For extended study periods, the technology used may need to be adapted in line with newly available technical options to avoid the risk of becoming outdated in the user realm, which in turn might jeopardize study validity in terms of randomized controlled trial designs. CONCLUSIONS: On the basis of lessons learned in this randomized controlled trial, we give recommendations to consider when designing and evaluating Web-based health interventions.

Experiences, expectations and challenges of an interactive mobile phone-based system to support self-management of hypertension: patients' and professionals' perspectives.

BACKGROUND: A well-controlled blood pressure (BP) reduces cardiovascular complications. Patient participation in care using technology may improve the current situation of only 13.8% of adults diagnosed with hypertension worldwide having their BP under control. OBJECTIVE: The objective of this study was to explore patients' and professionals' experiences of and expectations for an interactive mobile phone-based system to support self-management of hypertension. METHODS: The self-management system consists of: 1) a mobile phone platform for self-reports, motivational messages and reminders; 2) a device for measuring BP and 3) graphical feedback of self-reports. Patients diagnosed with high BP (n=20) and their treating professionals (n=7) participated in semi-structured interviews, after 8 weeks use of the system in clinical practice. Data were analyzed thematically. RESULTS: The self-reporting of BP, symptoms, medication use, medication side effects, lifestyle and well-being was perceived to offer insight into how daily life activities influenced BP and helped motivate a healthy lifestyle. Taking increased responsibility as a patient, by understanding factors affecting one's well-being, was reported as an enabling factor for a more effective care. Based on the experiences, some challenges were mentioned: for adoption of the system into clinical practice, professionals' educational role should be extended and there should be a reorganization of care to fully benefit from technology. The patients and professionals gave examples of further improvements to the system, for example, related to the visualization of graphs from self-reports and an integration of the system into the general technical infrastructure. These challenges are important on the path to accomplishing adoption. CONCLUSION: The potential of a more autonomous, knowledgeable and active patient, through use of the interactive mobile system would improve outcomes of hypertension treatment, which has been desired for decades. Documentation and visualization of patients' self-reports and the possibilities to communicate these with professionals may be a significant resource for person-centered care.

Promoting competition in Swedish primary care.

PURPOSE: The purpose of this paper is to examine the role of accreditation documents (ADs) in the competition based on provider quality in a quasi-market for primary healthcare. DESIGN/METHODOLOGY/APPROACH: The paper uses a mixed-method research methodology to analyse two primary healthcare ADs in two Swedish regions. In total, 19 interviews were conducted with actors involved in the creation and use of such documents. FINDINGS: This paper points to the crucial role of ADs in the identification of quality differences that influence the competition in primary healthcare. This finding contrasts with the commonly held laissez-faire idea that competition causes providers to develop their own service concepts and where the invisible hand creates quality differences. The paper adds to the discussion with its detailed description of how ADs create competition among primary healthcare providers through selection processes, quality differentiation, and ranking. RESEARCH LIMITATIONS/IMPLICATIONS: The paper does not explore quality differences in the medical treatment of patients in primary healthcare centres. PRACTICAL IMPLICATIONS: The paper provides insights for politicians on how to use ADs to control competition and regulate choice. ORIGINALITY/VALUE: The paper takes an innovative approach to the examination of how ADs increase the competition in primary healthcare choice.

Actors and intentions in the development process of a mobile phone platform for self-management of hypertension.

AIM: The aim of this study was to enhance the knowledge regarding actors and intentions in the development process of a mobile phone platform for self-management of hypertension. METHODS: Our research approach was a 14-month longitudinal "real-time ethnography" method of description and analysis. Data were collected through focus groups with patients and providers, patient interviews, and design meetings with researchers and experts. The analysis was informed by the concepts of actors and inscriptions in actor-network theory (ANT). RESULTS: Our study showed that laypersons, scientific actors, as well as technology itself, might influence development processes of support for self-management of hypertension. The intentions were inscribed into the technology design as well as the models of learning and treatment. CONCLUSIONS: The study highlighted important aspects of how actors and intentions feature in the development of the mobile phone platform to support self-management of hypertension. The study indicated the multifacetedness of the participating actors, including the prominent role of technology. The concrete results of such processes included questions in the self-report system, learning and treatment models.

Phases in development of an interactive mobile phone-based system to support self-management of hypertension.

Hypertension is a significant risk factor for heart disease and stroke worldwide. Effective treatment regimens exist; however, treatment adherence rates are poor (30%-50%). Improving self-management may be a way to increase adherence to treatment. The purpose of this paper is to describe the phases in the development and preliminary evaluation of an interactive mobile phone-based system aimed at supporting patients in self-managing their hypertension. A person-centered and participatory framework emphasizing patient involvement was used. An interdisciplinary group of researchers, patients with hypertension, and health care professionals who were specialized in hypertension care designed and developed a set of questions and motivational messages for use in an interactive mobile phone-based system. Guided by the US Food and Drug Administration framework for the development of patient-reported outcome measures, the development and evaluation process comprised three major development phases (1, defining; 2, adjusting; 3, confirming the conceptual framework and delivery system) and two evaluation and refinement phases (4, collecting, analyzing, interpreting data; 5, evaluating the self-management system in clinical practice). Evaluation of new mobile health systems in a structured manner is important to understand how various factors affect the development process from both a technical and human perspective. Forthcoming analyses will evaluate the effectiveness and utility of the mobile phone-based system in supporting the self-management of hypertension.

Role of Theories in the Design of Web-Based Person-Centered Support: A Critical Analysis.

Objective. The aim of this study was to provide a critical understanding of the role of theories and their compatibility with a person-centered approach in the design and evaluation of web-based support for the management of chronic illness. Methods. Exploration of web-based support research projects focusing on four cases: (1) preschool children aged 4-6 with bladder dysfunction and urogenital malformation; (2) young adults aged 16-25 living with mental illness; (3) women with type 1 diabetes who are pregnant or in early motherhood; and (4) women who have undergone surgery for breast cancer. Data comprised interviews with research leaders and documented plans. Analysis was performed by means of a cross-case methodology. Results. The used theories concerned design, learning, health and well-being, or transition. All web support products had been developed using a participatory design (PD). Fundamental to the technology design and evaluation of outcomes were theories focusing on learning and on health and well-being. All theories were compatible with a person-centered approach. However, a notable exception was the relatively collective character of PD and Communities of Practice. Conclusion. Our results illustrate multifaceted ways for theories to be used in the design and evaluation of web-based support.

Person-centred web-based support--development through a Swedish multi-case study.

BACKGROUND: Departing from the widespread use of the internet in modern society and the emerging use of web applications in healthcare this project captures persons' needs and expectations in order to develop highly usable web recourses. The purpose of this paper is to outline a multi-case research project focused on the development and evaluation of person-centred web-based support for people with long-term illness. To support the underlying idea to move beyond the illness, we approach the development of web support from the perspective of the emergent area of person-centred care. The project aims to contribute to the ongoing development of web-based supports in health care and to the emerging field of person-centred care. METHODS/DESIGN: The research design uses a meta-analytical approach through its focus on synthesizing experiences from four Swedish regional and national cases of design and use of web-based support in long-term illness. The cases include children (bladder dysfunction and urogenital malformation), young adults (living close to persons with mental illness), and two different cases of adults (women with breast cancer and childbearing women with type 1 diabetes). All of the cases are ongoing, though in different stages of design, implementation, and analysis. This, we argue, will lead to a synthesis of results on a meta-level not yet described. DISCUSSION: To allow valid comparisons between the four cases we explore and problematize them in relation to four main aspects: 1) The use of people's experiences and needs; 2) The role of use of theories in the design of person-centred web-based supports; 3) The evaluation of the effects of health outcomes for the informants involved and 4) The development of a generic person-centred model for learning and social support for people with long-term illness and their significant others. Person-centred web-based support is a new area and few studies focus on how web-based interventions can contribute to the development of person-centred care. In summary, the main intention of the project outlined here is to contribute with both a synthesis of results on meta-level from four cases and a substantial contribution to the field person-centred care.

Person-centered Web support to women with type 1 diabetes in pregnancy and early motherhood--the development process.

BACKGROUND: Pregnancy and early motherhood are extraordinarily demanding periods for women with type 1 diabetes, who therefore need optimal support. This article describes the process of developing person-centered Web-based support for women with type 1 diabetes during the period of pregnancy through early motherhood. Important aspects of person-centeredness are a broader scope of medicine, viewing the patient as a person, shared decision-making to accomplish a therapeutic alliance, and the role of documentation. MATERIALS AND METHODS: A participatory design was used in the development process to capture the target group's knowledge, experiences, and needs, and a systematic process map for Web-based support was used to describe the process. RESULTS: Content and layout in the Web support were developed collaboratively by project managers, advisory and scientific reference groups, technical producers, and representatives for the target group. Based on needs assessment and evidence synthesis, three main components of complementary Web-based support were identified: (1) specific information about pregnancy, childbirth, and early motherhood in relation to type 1 diabetes; (2) a self-care diary, including a device for documenting and evaluating blood glucose levels, insulin doses, food intake, physical activities, and overall well-being; and (3) a forum for communication between women with type 1 diabetes in the childbearing period. CONCLUSIONS: Using a perspective of person-centered care, a participatory design and the process map were fruitful for developing person-centered Web support for self-care and self-learning. The developed Web support product will be evaluated in a randomized controlled trial and further developed based on this result.

Decision support systems for choosing a primary health care provider in Sweden.

OBJECTIVE: To evaluate how patients are supported with information and other forms of Web-based decision support for making an informed choice of a primary health care provider. METHODS: The article is based on a comparative case study of recently developed tools provided by Web portals in Sweden (one national, three regional). The theoretical framework for analysis is the general calculation model, including the steps of isolating, examining, and ranking available options. RESULTS: The provision of information and other forms of support is reasonable when it comes to isolating a particular alternative or presenting a general view of alternatives. As for examining and ranking, one regional system and one national system offer support based on information from patient surveys and waiting times, and one regional system offers support based on provider competencies. CONCLUSION: One design alternative is to represent the opinions of patients about care centers, another is to represent the characteristics of care centers, and a third is to combine the two. The general calculation model is relevant as a framework for analysis from a practical as well as a theoretical viewpoint. PRACTICAL IMPLICATIONS: The study provides practical examples of decision support for patient choice in primary health care.

Internet use, needs and expectations of web-based information and communication in childbearing women with type 1 diabetes.

BACKGROUND: In the childbearing period women use the internet both to seek information and as an important source of communication. For women with type 1 diabetes, pregnancy and early motherhood constitute a more complex situation than for women in general. This implies need for support from various professionals and a way of bridging any discontinuity in care would be to develop a website providing complementary social support and information. The objective of this study was to explore internet use, needs, and expectations regarding web-based information and communication in childbearing women with type 1 diabetes. METHODS: Data were collected via a web-based survey with an explorative and descriptive design, in which 105 of 139 eligible mothers with type 1 diabetes and recent childbearing experience participated. The data were analyzed with descriptive and analytical statistics, and open answers with a directed content analysis. RESULTS: Of the 105 women, 22% never used the internet to search for information concerning pregnancy, childbirth, and parenthood. 12% searched for information every day, 29% one or more times a week, and 38% one or more times a month. Of the women 44% declared themselves to be passive participants on social websites, and 45% to be active participants. 45% had specific expectations of web-based support directed towards childbearing, especially those with higher educational level (P = .01). Expectations of instrumental and informational support included an expert-controlled website with reliable, updated, and information focused on childbearing and diabetes, improved access to diabetes care professionals and alternative ways to communicate and to receive childbearing-related support. The women also asked for online technical devices to manage the frequent monitoring of blood glucose during pregnancy. Informal, emotional, and appraisal support from women in similar situations was suggested as a way to provide an arena for belonging instead of creating feelings of alienation. CONCLUSIONS: Our results add important knowledge about the web-based needs of women with type 1 diabetes in relation to childbearing. This user directed study indicates specific areas of development for the provision of effective web-based support that includes facilities for reliable information, interactive support and social networking in this population.