Managing the Chronic

This thesis is based on research conducted on twenty-two disease management programs in the Netherlands. These programs were predominantly based in primary care facilities and focused on chronic diseases including diabetes, COPD, risk of cardiovascular disease, mental health issues, or co-morbidity for patients with multiple chronic diseases. The disease management programs were carried out by teams of clinicians and were supported by internal and external communication and chronic disease experts. As part of the programs, patients were invited to participate in extra educational sessions, offered additional appointments to discuss their concerns with their chronic disease, and/or given access to their medical record via an online patient portal; through the disease management programs, much emphasis was put on partnering with patients to manage their chronic disease. To understand how these disease management programs worked in practice, I conducted interviews with clinicians, patients, and external supporters; I also conducted online data collection of a patients’ support website to get further observations and deeper insight into the lives of those with a chronic disease. This research uncovers how the programs changed the lives of those who participated in them, and how disease management programs changed care in the programs. It also reveals how the research program that ran alongside the disease management program impacted healthcare delivery

Understanding Each Other In The Medical Encounter: Exploring therapists' and patients' understanding of each other's experiential knowledge through the Imitation Game

The ability of healthcare professionals to understand the lived experiences of their patients has become increasingly important, but has been a difficult topic to investigate empirically because it involves two distinctive research strands: interpretive phenomenological analysis (IPA) and patient-provider communication (PPC). While IPA focuses on experiences and illness narratives of patients, but not on therapist’s understanding of those, PPC surveys focus primarily on effective forms of communication without addressing the actual illness experiences of patients. There is a need for empirical research that combines both strands to investigate not only the experiences of patients, but also whether professionals are able to understand these. This study combined both strands by means of a novel research method called the Imitation Game (combined with other qualitative methods). This sociological method was developed to investigate what different social groups know of each other’s lifeworld. This article focused on the important domain of eating disorder treatment to investigate whether therapists were able to understand the experiences of their patients and vice versa. The study provide insights into the domains in which therapists and patients were able to develop insights into each other’s experiential knowledge (and where they had difficulties in doing so). The findings also implicate the high potential of the Imitation Game as an interdisciplinary research method. We propose that the Imitation Game may be particularly valuable as a ‘can opener’ that enables the development of in-depth, qualitative insights into the substantive themes that matter in the lifeworlds of patients and therapists

Understanding each other in the medical encounter: Exploring therapists’ and patients’ understanding of each other’s experiential knowledge through the Imitation Game

The ability of health-care professionals to understand the lived experiences of their patients has become increasingly important but has been a difficult topic to investigate empirically because it involves two distinctive research strands: interpretative phenomenological analysis and patient–provider communication. While interpretative phenomenological analysis focuses on experiences and illness narratives of patients, but not on therapist’s understanding of those, patient–provider communication surveys focus primarily on effective forms of communication without addressing the actual illness experiences of patients. There is a need for empirical research that combines both strands to investigate not only the experiences of patients but also whether professionals are able to understand these. This study combined both strands by means of a novel research method called the Imitation Game (combined with other qualitative methods). This sociological method was developed to investigate what different social groups know of each other’s lifeworld. It focused on the important domain of eating disorder treatment to investigate whether therapists were able to understand the experiences of their patients and vice versa. This study provides insights into the domains in which therapists and patients were able to develop insights into each other’s experiential knowledge (and where they had difficulties in doing so). The findings also implicate the high potential of the Imitation Game as an interdisciplinary research method. We propose that the Imitation Game may be particularly valuable as a ‘can opener’ that enables the development of in-depth, qualitative insights into the substantive themes that matter in the lifeworlds of patients and therapists

Disease management projects and the Chronic CareModel in action: Baseline qualitative research

Background: Disease management programs, especially those based on the Chronic Care Model (CCM),are increasingly common in the Netherlands. While disease management programs have beenwell-researched quantitatively and economically, less qualitative research has been done. Theoverall aim of the study is to explore how disease management programs are implementedwithin primary care settings in the Netherlands; this paper focuses on the early developmentand implementation stages of five disease management programs in the primary care setting,based on interviews with project leadership teams. Methods: At the five sites, eleven semi-structured interviews were conducted at the five selected siteswith sixteen professionals interviewed; all project leaders were interviewed. The interviewsfocused on each project's chosen chronic illness (diabetes, eating disorders, COPD, multimorbidity,CVRM) and project plan, barriers to development and implementation, the projectleaders' action and reactions, as well as their roles and responsibilities, and diseasemanagement strategies. Analysis was inductive and interpretive, based on the content of theinterviews. After analysis, the results of this research on disease management programs andthe Chronic Care Model are viewed from a traveling technology framework. Results: This analysis uncovered four themes that can be mapped to disease management and theChronic Care Model: (1) changing the health care system, (2) patient-centered care, (3)technological systems and barriers, and (4) integrating projects into the larger system. Projectleaders discussed the paths, both direct and indirect, for transforming the health care systemto one that addresses chronic illness. Patient-centered care was highlighted as needed and aparadigm shift for many. Challenges with technological systems were pervasive.

The management of cardiovascular disease in the Netherlands: analysis of different programmes

Background: Disease management programmes are increasingly used to improve the efficacy and effectiveness of chronic care delivery. But, disease management programme development and implementation is a complex undertaking that requires effective decision-making. Choices made in the earliest phases of programme development are crucial, as they ultimately impact costs, outcomes and sustainability. Methods: To increase our understanding of the choices that primary healthcare practices face when implementing such programmes and to stimulate successful implementation and sustainability, we compared the early implementation of eight cardiovascular disease management programmes initiated and managed by healthcare practices in various regions of the Netherlands. Using a mixed-methods design, we identified differences in and challenges to programme implementation in terms of context, patient characteristics, disease management level, healthcare utilisation costs, development costs and health-related quality of life. Results: Shifting to a multidisciplinary, patient-centred care pathway approach to disease management is demanding for organisations, professionals and patients, and is especially vulnerable when sustainable change is the goal. Funding is an important barrier to sustainable implementation of cardiovascular disease management programmes, although development costs of the individual programmes varied considerably in relation to the length of the development period. The large number of professionals involved in combination with duration of programme development was the largest cost drivers. While Information and Communication Technology systems to support the new care pathways did not directly contribute to higher costs, delays in implementation indirectly did. Conclusions: Developing and implementing cardiovascular disease management programmes is time-consuming and challenging. Multidisciplinary, patient-centred care demands multifaceted changes in routine care. As care pathways become more complex, they also become more expensive. Better preparedness and training can prevent unnecessary delays during the implementation period and are crucial to reducing costs

Evaluatie van disease management programma's in Nederland

In het ZonMw programma ‘Disease Management Chronische Ziekten’ (DMCZ) zijn 22 praktijkprojecten ontwikkeld, gevolgd en geëvalueerd. Deze ZonMw-praktijkprojecten hadden een looptijd van ongeveer drie jaar. Gedurende deze periode zijn de projecten systematisch gevolgd op een aantal proces- en effectmaten en kosten-effectiviteit. De verwachting is dat disease management programma's gebaseerd op Ed Wagner's chronische zorgmodel bijdragen aan betere kwaliteit van chronische zorgverlening. Inzicht in de korte en lange termijn effecten van implementatie van dit type programma's voor verschillende chronische aandoeningen is echter nog schaars. [...

The role of disease management programs in the health behavior of chronically ill patients

__Abstract__ Objective: Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients. Methods: This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1. Results: Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients' physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (p< 0.01), changes in physical activity (p< 0.001), and percentage of smokers at T0 (p< 0.05) predicted physical quality of life at T1. Project managers reported that DMPs improved patient-professional interaction. The ability to set more concrete targets improved patients' health behaviors. Conclusions: DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients. Practice implications: Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients

Dynamic of online and off-line watching in self-management programs

In this paper, we explore the multiple types of online and off-line watching involved in self-management programs for people with a chronic disease through data collection in two disease management programs. This paper builds upon Mann’s new work on veillance, which is defined as watching from above (surveillance), watching from below (sousveillance), watching data (dataveillance), and watching everything (uberveillance) (Mann, 2013; Mann and Ferenbok, 2013). This paper expounds upon veillance to include watching each other (coveillance), watching one’s self (self-surveillance), and the umbrella concept of webveillance (watching of and on the Internet). We argue that these forms of veillance, as conducted through self-management programs, techniques, and technologies, affect the relationship between patients and clinicians, transform the allocation of medical responsibilities, alter the architecture of healthcare, and expand the places in which healthcare is performed. This has significant implications on online activities of patients and clinicians, as well as how and by whom healthcare is conducted in the doctor’s office, the home, and public spaces

Recommendations on how to achieve tobacco-free nations in Europe.

European countries vary widely in the development and implementation of effective tobacco-control programs and policies. Why some countries lag behind others is inherently a political matter. National-level policymakers struggle between the need to protect public health and the need to recognize economic and ideological considerations. Within this context, use of scientific evidence plays an important role in the policy making process. Articles 20 and 22 of the World Health Organisation’s Framework Convention of Tobacco Control (FCTC) oblige countries to develop and coordinate research on aspects of tobacco control and require of them to facilitate knowledge transfer and capacity building between countries. This paper considers various ways how EU and national policy makers may accomplish this. We conclude that progress in three areas is needed: 1) generation of more scientific evidence relevant for each country; 2) facilitation of policy learning between countries; and 3) building capacity and collaborations between researchers and tobacco-control advocates to bridge the gap from research to policy, especially in countries with weak tobacco-control infrastructures