In this study, disease management programs, as defined by the elements of the Chronic Care Model, are analyzed as a traveling technology. A traveling technology refers to the translations, adaptations, and expenditures that occur when an object or program moves from one location to another; traveling is more than the translation of the disease management projects, as it encompasses the translation of the disease management programs to the local setting, but focuses on the travel expenditures and travel documents created in the process [27
]. As a result, project leaders play an important role in this process, especially during the development and early implementation phases. It’s important to note that the traveling expenditures of the programs are much more than financial and include the social costs and changed expectations, the administrative effort, and the altered obligations for patients and staff; these traveling expenditures are often hidden and in many ways, unexpected by the project leaders.
Through management and organizational work, the project directors serve as ‘travel guides’ for the programs, as they oversee the expenditures of the programs, help guide the travel of the disease management programs to an individual clinician’s offices, assist clinicians involved in the projects in the travel of the programs to and with patients, and connect the disease management programs to a global disease management community. Much of this work involves the creation and management of documents involved in each of the aspects of the disease management programs; these documents include framing documents, such as revised project plans, and communication documents, such as emails to clinicians and newsletters. Each aspect or theme of disease management (changing the health care system, patient-centered care, technological systems and barriers, and integrating projects into the larger health care system) involves the creation or management of documents or communications (including telephone and in-person communication) by the project leaders. As can be seen in the interviews, project leaders were frequently communicating with the clinicians and editing ICT plans to match the available computer programs. These documents travel the technology, both literally (as a newsletter moves from the project director to the clinician) and figuratively (as the documents house strategies and networks for the traveling of the programs).
While disease management programs have been widely touted as a method of reducing costs in health care delivery, research shows that the implementation costs can have a large financial impact [28
]. However, the costs of developing and implementing a disease management program are more than money and effort. These traveling expenditures include the making and managing of program documents, the developing and maintaining of relationships and networks, the re-shaping of roles and responsibilities of patients and clinicians, and the adapting and moving of regulations and policies [29
]. In the five disease management programs, we see that project directors are aware of these traveling expenditures. This can be seen in the project leader’s statements about the development and implementation of ICT systems, as well as in discussions of clinician training. The time needed to refine and develop the programs, to manage the timeline of the programs in relation to the ICT system, and to negotiate relationships with software developers are all expenditures that the project director must manage, even when many of the expenditures are out of his/her control.
While it might be assumed that as ‘travel guides’, the project directors are in control of the projects, this is not unvaryingly true. In fact, control and traveling of the programs shifts between the project director, outside contractors, clinicians, and patients. In some cases, the project director actively moves the control, such as by working to change the role of the patient to one that is more self-managed, while in other cases, both the control of the programs and its traveling moves in spite of the actions and desires of the project director. This movement of control can be seen in the project directors’ statements about the development of ICT programs and in their thoughts on the challenges associated with the changed roles for clinicians in regard to patient self-management. However, while the project director may be (in title and in role) in charge of the project, the traveling of the disease management programs is also reliant on the actions (and inactions) of the local clinicians, patients, and outside contractors.
The disease management programs, in line with the elements of the Chronic Care Model, are implementing some form of computer-based health system. These computer-based health systems are designed to enable the flow of information between clinicians in multiple locations, connect clinicians and patients, and organize the work of the programs through communication and the posting of project plans and meeting notes. Yet computer-based health systems in general are still a work in progress for the technological developers and for the end-users [30
]. Implementing computer-based systems is a major undertaking for health care organizations, needing support, organizational, cultural, and technical changes [31
]; even when implemented, the computer-based system may not provide the improvement in care desired, but may increase mistakes in medical record documentation, medication dosing, and may, in fact, be more difficult for clinicians to use [32
]. Developing and using computer-based systems to travel the program to and between health care providers, project leaders, and patients is not a simple task but is a ‘mutual shaping’ of expectations and goals [33
]. This mutual shaping can be seen in revised project plans for ICT systems, as well as extended timelines.
Better care for patients with a chronic condition is one of the main goals of the disease management programs. Project directors see disease management as a patient-led journey (it’s the process of the client)
that focuses on the needs of the patient (the client knows best
) through self-management. Project directors work to travel, to move, both the patients to the program (to move clients to the clinic)
and the program to the patients. In line with the traveling technology framework, project directors use movement verbs when discussing patient involvement in the disease management program, highlighting the actions that the project directors are taking to move the program to the patient. Yet, in line with literature on self-management [34
], project directors see that self-management has challenges and limitations (the challenge is to know who needs support and who can self-manage
). Through their understanding of these challenges and limitations, project directors work to find ways to travel the programs to the patient in a way that is appropriate and thought to be acceptable to the patients (one is to provide adequate information but not in professional language but in language that appeals to teenagers, so anecdotally, but to provide information which is at least scientifically accurate).
While traveling the programs to patients and to the clinicians involved in the programs, project directors also see their work as connected to a larger global arena. Globalized language is apparent in the projects (all the professionals in health care, what worldwide they discovered), tying the project leaders and the projects to a larger movement in health care. The project travels from the global, as defined by the elements of the Chronic Care Model, to the local health care providers. Project leaders are aware of the influence of outside models, with some referencing the chronic care or the Chronic Care Model as an influencing factor, and are cognizant of the longer term implications of the projects (The project is a model for all future chronic care programs.). This awareness leads to broader efforts when developing the programs, as well as a willingness to be influenced by larger trends within health care (look according to the Chronic Care Model). The project leaders are responsible for traveling to and from the large global sphere.
Research on disease management programs and the Chronic Care Model is increasingly relevant, as health care systems are turning to disease management programs to treat the rising number of patients with chronic diseases. While other research has focused on the implementation of the Chronic Care Model in Belgium [35
], where the care of patients with chronic disease is delivered in primary care setting within a limited structure, this research focuses on the primary care setting in the Netherlands; in the Netherlands, the primary care setting is the typical setting of disease management programs for the care of patients with chronic diseases, including those studied in this article. Similar to the findings in this article (I have to tell [the GPs] that it’s just a project)
, research conducted in one large health care organization implementing programs based on the Chronic Care Model found that physician engagement could be difficult due to lack of commitment, lack of time, and change fatigue [36
]. Other researchers in the US have shown that while health care organizations using collaborative teams can make substantial changes in the delivery of care for patients with chronic diseases, these changes can be difficult to maintain at the same level of intensity [37
]. As the research conducted in this article is during the planning and early implementation stages of disease management programs, it will be useful to observe the evolution of the disease management programs as a traveling technology over time.
This article presents information that could benefit project leaders of disease management in understanding the longer term implications of their work in both global and local arenas. This information could be especially useful to project leaders within the Netherlands or who are new to disease management programs. This data shows how project leaders adapt to and adopt new systems. The qualitative data on which this article builds give important insights into how project leaders, especially project leaders who are new to disease management programs, struggle with and overcome challenges involved in interacting with a traveling technology such as the Chronic Care Model. Understanding how project leaders struggle with and overcome these challenges will help facilitate the development of better supportive structures for disease management projects, as well as the development of more comprehensive project plans and budgets.
However, the paper is limited by the number of interviews. As the interviews were conducted in the early stages of the programs, only 11 interviews are available. In the case of the eating disorders project, where multiple mini-projects are being conducted as part of the larger disease management project, each mini-project leader was interviewed. As this research follows the project leaders and programs over time, this will be improved in future papers and will show not only how project leaders work with and through the Chronic Care Model, but will also reveal how GPs and other clinicians adapt and adopt to the project leader’s guidance. While the limited number of interviews may impact the conclusions, the use of these interviews is still relevant; the mini-project leaders serve a similar role as the project leaders at other sites, overseeing the projects, the project staff, the timeline, communication with patients and/or other clinicians, and the content of the mini-project.