From the empirical data, four disease management themes, as defined by the Chronic Care Model, emerged:
changing the health care system,
technological systems and barriers, and
integrating projects into the larger health care system.
Illustrative quotes from these themes have been selected from this article and are seen below in italics and off-set from the text. Through defining disease management through these Chronic Care Model themes, the research team was able to understand and explore how disease management programs travel. This research shows how project leaders manage and interact with the members of the disease management programs, and ultimately, the patients and clients impacted by the disease management programs, as well as how project leaders view the travel expenditures associated with the programs.
Changing the health care system
Project leaders and project leadership teams, including project managers and mini-project leaders, frequently tied their disease management project work to larger efforts in health care and in their health care system’s delivery of care in specific. Project leaders sited the goals of the programs as the impetus to plan (and in the future, put in place) changes, as well as the goal of improving patient care.
The end goal is to reach more people in a better way with a continuous quality of care during the, on average, 5 to 7 year illness period. That’s the idea. That’s ambitious. Yeah, it’s very exciting because we have to change the whole way of thinking here and change the whole organizational model as well… So we have inner barriers to continuity in care as well. Lack of flexibility there as well, so we need to reorganize internally this year. (Interview with E, project director for the eating disorder project)
The latitude afforded to the project leaders in developing their programs means that the translation from the project plan on paper to action in practice can be done in a number of ways: as a drastic reorganization, in phases, or first as a project with later spoken or unspoken plans for integration into the system. It also involves translation work in relationship to stakeholders:
I have to tell [the GPs] that it’s just a project and that we will need an evaluation of the project before it comes to be common practice. (Interview with X, project leader with the CVR project)
Patient-centered care, as defined by the Chronic Care Model through the Self-Management Support element of the model, highlights “the patient’s central role in managing their health” . While the majority of the project leaders did not mention the Chronic Care Model as inspiration for the changes that they plan to make, a few did and directly tied their actions to the model.
For example, that together with the patient, you look at the self-management of that patient and that you look according to the Chronic Care Model, like yeah, I have to work along with the patient on all the factors and not only give information, because that isn’t going to help that patient. That’s what is important, that I can see now in a broad perspective and then you can make the most of giving care. (Interview 1 with H, project manager with the CVR project)
And then another thing was the Chronic Care Model is a patient-centered model. And we are not used to working [in a] patient-centered [way]. It’s becoming more and more [popular]. What’s new in our system is that we choose to work in a patient-centered way. (Interview with X, project leader with the CVR project)
However, as noted in the quote above, working in a patient-centered way is a change within the system, a change that costs time and effort. This expenditure of time and effort is for a common goal: involving patients in their health care to improve their health.
Well and involving the patient now is one of the most important things because what we’ve discovered and what worldwide they discovered is that lifestyle change is one of the most important issues that can make a difference on the long term, but is also one of the most difficult things to realize. And the only way to do that is getting patients involved, and getting them to participate in their own disease. (Interview with B, project leader for the diabetes project)
Project leaders emphasize how becoming more patient-centered impacts the providers and how providers will need to change how care is delivered.
The two things that are the most important are the self management of the patients themselves because the patient is the main issue of gaining a long term benefit out of the system. So that’s one thing. But what’s also necessary is that the care givers, the doctors, the physicians, the nurses, they have to make a switch in not only being a health care giver but being a coach, being able to give the support to the patient that they can make their own self-management system and that they can make their own choices and that will really make a difference, instead of the choice of the health care giver. (Interview with B, project leader for the diabetes project)
Other project leaders place emphasis on the changed role of the patient and their involvement in their care process.
But it’s the process of the client, not the process of the one who’s giving the support. So the process of the client is leading. That’s a difficult part of it, but the essential part of it. Do you know what I mean? I mean… I can tell you what you’ve got to do to recovery, what’s good for you. But that won’t be necessarily your way. …I’ve got to connect with your approaches. And look together with you and support you to empower you to find your own path in recovery. (Interview with P, mini-project leader for the eating disorder project)
Patient-centered care can be a challenge for health care providers, as it may require them to change the ways in which care is presented and delivered to patients. Health care providers must think and act in new ways, as well as continue to alter their health care systems to sustain this new way of providing care.
The challenge is to know who needs support and who can self- manage. (Interview with H, project manager for the CVR project)
To learn to think about the client is the most difficult thing [to do]. To really think about the client. Not that I know what is best for the client. The client knows best. That’s a hell of a job. (Interview with K, project manager for the eating disorder project)
Technological systems and barriers
For the project leaders, implementing a disease management program is a process of harmonizing the movement of information and actions between practice sites, patients, and the project leaders. In all cases, this change to the health care system involves new communication technology. The improvement or addition of a technological system is a common way to change the mode of health care delivery and is emphasized in the call for proposals for the projects. The planned changes in the projects include the development of patient portals to assist patients in self-management, patient health records, computerized communication systems to connect general practitioners and other health care professionals, and websites for patients/clients to connect with clinicians and others. These changes are seen as important for organizing and improving care for both patients and clinicians.
So now all general practices have their own registration and programs. And we think it’s very important that the general practices and the hospital work together and can see the registration and can communicate together. And we think that we need another program for that. (Interview 1 with AC, project leader for the COPD project)
But what is especially important and that’s where we are now spending a lot of time is to properly organize care with the GPs who work on a computer. (Interview with H, project manager for the CVR project)
However, ICT systems are also seen as a barrier, in that the development and implementation of the systems is costly in both time and effort. Project leaders must also spend time prioritizing and in some ways, limiting, the focus of the ICT system.
We have a lot of barriers. First barrier is with the ICT system. It’s not already finished… It was a long step to come so far as we are now. (Interview 1 with X, project leader with the CVR project)
The fact that the software builder couldn’t deliver what they said they would deliver [was a barrier]. And still now we do not really have the perfect system and the perfect system does not exist, I know. But there are too many things that are really what we want. (Interview with B, project leader for the diabetes project)
And you have the program, and it’s sort of the same, and it works on the mobile phone. And E. thought that it would be a program that worked on the Internet and on the mobile phone. And there are two programs, but the content is different, so you have only prevention on the Internet or after care on the SMS. So there were all kind of technology things that had to be discussed before we decided what to do. (Interview with M, mini-project leader for the eating disorder project)
Patients and clients, too, play a role in the development of an ICT system. Depending on the system, patients and clients will be able to interact directly with clinicians through a website or patient portal, clinicians at multiple locations will have the ability to interface with a patient’s record, and/or project leaders and clinicians will be able to review the information of large sets of patients for patterns and quality control.
They [the patients] can choose their treatments. And all those steps we have laid out in our ICT scheme.(Interview with X, project leader with the CVR project)
However, not all patients are expected to want to directly participate in an ICT system or have the skills to do so at this time.
Well there are patients who say “I do not want that my information is put in the software system” so we have a form that they can sign if they do not what that. (Interview with B, project leader with the diabetes project)
Integrating projects into the larger health care system
As the projects are funded for a short amount of time, the project leaders recognize the need to integrate the projects into the larger health care system if they want to make lasting changes to the delivery of health care. This effort to integrate projects into routine care often involves the development of program plans, budgets, the hiring of new staff, and/or the training of existing staff. Some project leaders see the projects as an opportunity to expand the scope of the projects and create a system for the management of chronic disease in general at their sites.
The third step is to make the disease management program a multi-morbidity program. These steps are further integration into chronic care. The project is a model for all future chronic care programs. We don’t believe in a system for separate projects formulti-morbidity… One program. (Interview with V, project leader for the multi-morbidity project)
And the second thing there is trying to make it more a disease management than only one chronic care model. For COPD and cardiovascular, we know that we are going to introduce also the chain system, so we’re trying to make the base ready for other chronic care systems. (Interview with B, project leader for the diabetes project)
Other members of the project leadership team are working with clinicians to imbed the current changes into the current health care delivery system. So they have to integrate it in their daily work…in their practice. That’s a very big step to get it implemented there and instruct all the other employees in the practices. (Interview with R, outside expert at the COPD project)
However, project leaders find that working with clinicians to think beyond the project and beyond their currently defined roles can be a challenge.
That’s the biggest challenge. Because we are all professionals at this moment. It’s very difficult to connect the clinic with the outpatient clinic. Ah, I think that we are, as professionals, able to want to look further than our little business. It’s the same old story with all the professionals in health care. (Interview with K, project manager for the eating disorder project)
For the project leaders, the disease management programs are an iterative process, with ongoing efforts made to improve the programs and the care that they help provide.
The program is not the answer, only an answer. We have to have the courage to change again without always being on the move. (Interview with S, department head at the eating disorders project)