According to the Diabetes Atlas of the International Diabetes Federation (IDF) some 382 million people worldwide, or 8.3% of adults, are estimated to have diabetes in 2014. If this trend continues, by 2035, some 592 million people, or one adult in 10, will have diabetes. This equates to approximately three new cases every 10 s, or almost 10 million per year [1].
Being diagnosed with diabetes often means a major shock to the person concerned. Diabetes is basically a life-long disease and like all chronic diseases it cannot be cured. Nevertheless, there are strategies for improving the patients’ health status and one key aspect is self-management. Besides learning about the disease, people have to adapt their lifestyles, particularly those aspects that are related to physical activity and nutrition.
A meta-analysis and review of randomized control trials carried out by Calvin et al. [2] revealed that the use of consumer health information technologies in supporting diabetes self-management appears to have potential benefits for patients’ self-management of diabetes. However, self-management is not something trivial. Type II Diabetic (T2D) patients, who typically are affected at a later stage of their lives, find it particularly difficult to change lifestyle routines that have been formulated over a long period of time. Having a chronic disease means having to cope with “something” that severely impacts one’s autonomy. Patients have to learn that their behavior influences their disease status and that continuous adaptations are necessary. However, making the required adaptations may conflict with other priorities and constraints, let alone that perfect control is not possible.
As a self-management facilitator the concept of patient empowerment has emerged in recent years. Patient empowerment can be seen as a healthcare philosophy that emerges from the perception that optimal outcomes of healthcare interventions are achieved when patients become active participants in the healthcare process [3]. Towards this direction a key point is to make patient empowerment an integral part of daily life and in particular of the healthcare process [3].
In Ref. [4] Lucas and Rojas presented a proactive health management and empowerment framework for senior citizens that supported tele-monitoring and tele-nursing functionalities for chronic patients. Its pilot study revealed that a significantly high percentage of participants had some kind of benefit from using the system. For example, almost 80% of participants learned more about their health conditions, 71% of participants had an increased awareness of their individual diet and nutrition, and 63% of participants self-reported health improvements.
In the various self-management interventions also the relationship among patients and healthcare professionals is challenged. Bjerkan et al. [6] examined the impact of an ICT based collaboration tool in individual care planning and realized that in some cases, a power transition took place in the care process, which led to patient empowerment. On the other hand, the study of Urowitz et al. [5] about the impact of a diabetes self-management portal in patients revealed a grey area in the roles that the physicians should play in the facilitation of disease management. The same study indicates that although the patient portal as such can facilitate access to useful information material, usability aspects are very crucial for keeping the users motivated in using the portal. In their study about the role of ICT in diabetes management, Spanakis et al. [7] found that although ICT-based disease management may bring profound changes in self-care and empowerment, a careful balance between information and communication is important to avoid information overload and excess. A systematic review of IT based diabetes self-management approaches is presented by El-Gayar et al. [8].
This paper presents a modular, ICT-based patient empowerment framework that fosters self-management of diabetes. The framework was designed, implemented and piloted in the context of EMPOWER, an FP7 collaborative project supported in part by the European Commission. The framework incorporates and exploits various sources of personal health data and clinical knowledge towards supporting the patients in the management of disease related decisions and actions. Patient empowerment is fostered by personalized ICT services delivered through web and mobile applications that guide the patients in behavioral changes while ensuring adherence with evidence based treatment guidelines. This patient-centric functionality is supplemented by functionality for the physicians who remain present in the disease management cycle by guiding their patients in disease management, whilst staying informed about their progress.
Patient empowerment interventions aim at involving patients to a greater extent in their own healthcare and disease management cycle. We approach this domain from a technological perspective, by introducing an ICT-based patient empowerment framework that facilitates self-management pathways (SMP). The SMP is a cyclical process that includes medical consultations followed by self-management goal setting, then self-management actions, then feedback collection, and finally evaluation and
We considered the usage of the applications and services of the ICT-based patient empowerment framework separately for the patients and the physicians. Of all the patients included in the pilot study, 46 patients (77%) reported to have been using only the web application (self-management portal), and 14 patients (23%) (4 in Germany, 10 in Turkey) reported to have been using both the portal and the mobile application. All patients in Turkey used the application for collecting ODLs in Journals (
Being diagnosed with diabetes is a major issue for the persons concerned and imposes the need for non-trivial changes in their lifestyle. Diabetes’ treatment involves a lot of self-management activities, many of which are related to their daily lifestyle, like nutrition and physical activity.
Several studies highlight the positive impact of ICT on disease self-management. The pilot study presented in this paper confirmed this principle and revealed that a patient empowerment approach based on
All authors made substantial contributions in the methods design. H. Demski, S. Mantwill, and C. Hildebrand extracted and analyzed the data. I. Lamprinos drafted the manuscript. All authors interpreted the results and were involved on revising the final draft.
None of the authors has any conflict of interest in the manuscript. There were not any financial or other relations with relevant parties that could have affected the results and conclusions of the study. Summary points What was known already before our study Self-management can enable patients to have better control of their disease. However, self-management is not something trivial. Type II Diabetic (T2D) patients, who typically are affected at a later stage of their lives, find it particularly
This work was supported in part by the European Commission’s Seventh Framework Program (FP7/2007-2013) under grant agreement No 288209, EMPOWER Project. The authors would like to thank their colleagues in the EMPOWER project for the collaborative work and their contribution in the conception, design, implementation and validation realization of the ICT-based diabetic patients’ empowerment framework. More information can be found at www.empower-fp7.eu.
The World Health Organization has also emphasised “patient empowerment” among the significant goals in their Health Policy Framework2, thereby supporting the increased usage of mHealth applications that allow more patient control. In this manner, mHealth platforms expect to improve the communication between healthcare providers and patients, increase their satisfaction levels, and lead to higher success rates of health-related outcomes (Lamprinos et al., 2016; Tartaglione, Cavacece, Cassia, & Russo, 2018; Wakefield et al., 2018; Ghose, Guo, Li, & Dang, 2021; Yang, Guo, Peng, & Lai, 2022). Nevertheless, several challenges still plague mHealth apps, affecting the overall experience the customers (i.e., patients) enjoy during usage.
Specifically, this study verifies that the pharmacists on the platform can empower patients with information support through follow-ups, consultations and short message reminders using ICTtools. This finding is consistent with prior literature, which has indicated that ICT-based interventions are useful for patient empowerment (Lamprinos et al., 2016) and that patient empowerment can only be achieved when healthcare professionals engage in the interventions (Ammenwerth, 2018). This study provides valuable insights for online health platform designers, managers, and healthcare practitioners.
We found that the patients' parents gained a more active and essential role in their children's treatment throughout the process, especially in the pre-surgery and rehabilitation phases by using citizen-centric connected health solutions. Many studies have noted that in the future, patients will be more interactive partners of healthcare and will become more responsible for the efficiency of their treatment (Corbin et al., 2001; Kinnunen et al., 2016; Lamprinos et al., 2016). In our case, we also found that the patient empowerment achieved through family-driven connected health solutions would improve and transform the daily tasks of current agents.
Physicians’ commitment to reviewing therapy and PROs was reciprocated with patients’ increased engagement with therapy and acceptance of mhealth apps, leading to a significant improvement in clinical parameters [33,51,52,65]. Patients’ high acceptance of the mhealth tools was attributed to the sense of not dealing with illness on their own when updates were communicated to their doctor [32,38,59], and the easier accessibility to HCP without the need for a third party such as parents/guardians [42,46]. Closed loop feedback systems created through mhealth apps allowed health professionals to react in time with personalized adjustments to patient care.
