Social support is an important part of chronic disease management which is why we .... social media is being considered to capture the interest of adolescents ...
The Use Of A Gamified Platform To Empower And Increase Patient Engagement In Diabetes Mellitus Adolescents Guido Giunti, MD 1, Agustín Ciancaglini, MD PED1, Carlos Otero, MD1, Analía Baum, MD1, Fernán Gonzalez Bernaldo de Quiros, MD1 1
Hospital Italiano de Buenos Aires, Ciudad Autónoma de Buenos Aires, Argentina
Introduction Effective chronic disease management can result in improved health outcomes and increased quality of life 1. Such is the case that the World Health Organization has an indicator known as DALYs 2 (Disability Adjusted Life Years) to quantify the Burden of Disease from mortality and morbidity. The International Diabetes Federation estimates that in the North American and Caribbean region there are close to 109 thousand children under the age of 15 with Type 1 Diabetes. In the United States it is estimated that the economic impact of this disease is such that a person with diabetes spends 2.3 times more than the average person’s in medical expenditures3. In the South and Central America Region an estimated 45,6 thousand children under the age of 15 live in the region with Type 1 Diabetes 4. Patients with type 1 diabetes are often diagnosed and start treatment at an early age. The incidence of type 2 diabetes among youth is increasing5–8. This is of particular concern because diabetes is a chronic disease that requires a high degree of adherence to the medical treatment plan through self-management9–11, which may be difficult for youth of this age12–15.So far, despite advances in technology that ease insulin delivery with pens or pumps, adherence to diabetes regimens is often problematic for patients of all ages, but most difficult for adolescents16. There are studies that show a lack of correlation between insulin regimen and glycemic control17. It is likely that self-care behaviors and educational models have substantial impact on outcomes and that increased attention to these factors may lead to improved blood glucose control. Finding ways to help adolescents engage in self-management is a critical issue9–11. Patient empowerment is the enhanced ability of patients to actively understand and influence their health status18 and would be achieved through proper ‘Patient Education’19. However, providing information alone, without the necessary incentives, does not insure a positive effect20,21 as many young diabetic patients are well informed about their situation but don’t act accordingly22. A systematic review of ecological interventions for health behavior suggests that the use of mobile technology-based ecological momentary interventions can be effectively implemented for a variety of health behaviors and psychological and physical symptoms 23. Also, there is research that supports the integration of social elements to incentivize behaviors 24. A challenging scenario Younger generations are designated by some as ‘‘digital natives’’25,26, for them, technologies such as personal computers, video games and mobile devices have always existed and are used as something that was always part of their lives27. Recently self-tracking has become rather popular28. Such self-monitoring and self-sensing can combine wearable sensors and wearable computing. There are already more than 1.08 billion smartphones of a total of 5 billion mobile phones around the world, with 80% of the population having a mobile phone 29. There is great opportunity for mHealth in using these mobile devices and, in fact, a significant number of mHealth applications have been already developed. Self-determination theory (SDT) is a macro-theory of human motivation that has been applied to identifying which factors sustain individuals’ motivation within video games30. SDT postulates that the more often basic psychological needs for autonomy, competence, and relatedness are satisfied within a game context, making
both the experience more enjoyable and the motivation more sustainable 31. There is also evidence that a meaningful and engaging narrative seems to help sustain engagement32. The use of game elements in non-game environments to enhance user experience and increase engagement is called Gamification33. This practice has been incorporated with commercial success into several platforms like Linkedin, Badgeville, and Facebook and this has led researchers to theorize that it could also be used as a tool to increase student engagement and to drive desirable learning behaviors on them34. Game elements provide engagement consistent with various other theories of motivation as well 35, such as positive psychology (e.g., flow)36,37, and also provide instant feedback on actions. Feedback is more effective when it provides sufficient and specific information for goal achievement and is presented relatively close in time to the event being evaluated38,39. Feedback systems can be used to reference individual progress, make social comparisons, or they can refer to task criteria40. Our proposed solution Taking the above into consideration we have proposed the development and use of a platform to promote selfmanagement by enabling patients to monitor their condition and track their treatment adherence while creating positive feedback loops through game elements that reward desirable behaviors and provide health information. Monitoring Aspects Home telemonitoring (HT) represents a promising approach for enabling patients with chronic conditions to be followed up by clinicians more frequently, over longer periods of time, away from hospital settings41–44. Within the healthcare sector, apps are supporting the management of illnesses, thereby promoting health awareness and well-being29,45,46. Specifically, a multitude of apps have been developed to assist patients in the management of diabetes mellitus type 1 or 229,47. The documentation function of the platform includes recording and monitoring of individual eating habits (eg, the bread unit intake); log the frequency of the user’s physical activity and the individual medical therapy (type and frequency). Recording blood glucose values is another feature included although during the initial stages blood glucose values would only be inputted manually, a feature to transfer data wirelessly and automatically from Bluetooth measuring devices is scheduled for implementation. As El-Gayar et al point out48, this will probably be an important driver for the perceived ease of use. Integrating our platform with our Hospital’s existing Personal Health Record (PHR) will allow the platform to extract previously stored data. A detailed list of monitoring features can be found in Appendix A. Table 1. Features that require and benefit from PHR integration are described in Appendix A. Table 2. Gamified Aspects In order to incentivize adherence, a point system will be implemented based on operant conditioning and schedules of reinforcement49–51. A combination of different schedules of reinforcement will be employed. Continuous reinforcement takes place when the desired behavior is rewarded or “reinforced” every single time it occurs, this is used in order to create a strong association between behavior and response. In partial reinforcement, the response is reinforced only part of the time which causes the subject to continue trying. Learned behaviors are acquired more slowly with partial reinforcement, but the response is more resistant to extinction. There are different schedules of partial reinforcement based on the number of responses that have occurred (ratio) or the length of time since the last reinforcer was available (interval). These in turn can be either fixed or variable49–51
This point system provides feedback to patients in the form of different “scores”, breaking the long arc of managing a chronic lifelong condition into smaller, more manageable units. Feedback loops are essential parts of all games, and they are seen most frequently in the interplay between scores and levels52,53. Levels and other progress mechanics such as “achievements” further add to this positive feedback loop. An assortment of visual elements will represent the different increments to the individual’s point score. Points System Performing actions that are needed for managing their conditions will be considered a “required goal” and the patient will receive “points”. “Points” will be rewarded based on Diabetes Mellitus’ clinical and treatment objectives54 with the possibility of customizing a patient’s reward to specific activities to allow fine-tuning. During the patient’s initial use points will follow a continuous reinforcement schedule (see Appendix A. Table 3). An accumulation of a sufficient number of points increases a patient's "Level", acting in this manner as a fixed ratio partial reinforcement. A “level” is a number that represents the patient’s overall performance and treatment adherence. By gaining levels, patients will gain status and “achievements” within the gamified platform. The level progression is geometrical, to give the patient a better sense of progress and growth during the game. See Appendix A. Table 4. Achievements System “Achievements” are rewards to “optional goals” in the form of arbitrary challenges. These achievements may coincide with the inherent goals the treatment itself, such as having perfect adherence to the treatment for a specific period of time, or may also be independent of the clinical and treatment objectives, such as helping a fellow patient stick to the treatment. Achievements act as fixed-ratio or fixed-interval partial reinforcements (see Appendix A. Table 5). Social Aspects Social support is an important part of chronic disease management which is why we decided to include social elements to provide encouragement and positive feedback between users. User Profile Patients will have a User Profile which will aggregate information from the Monitoring Aspects and the Gamified Aspects. This is meant so that the patient can display his or hers Points, Achievements and Levels giving the user a “bragging rights” about how well they are taking care of themselves. Whenever the user gets Achievements or Levels, that information will be highlighted on their User Profile. The user will have full control as to which information, whether it’s personal, clinical or treatment related, becomes public through adjusting the user account settings. Information can be shared with anyone on the platform (public), only Friends or no one (private). Friending and Groups Friending is the act of adding someone to a list of "friends" on a social networking service. The notion does not necessarily involve the concept of friendship 55. The act of "friending" someone grants that person special privileges on the platform with respect to oneself. Users will be able to cheer and like their friend’s updates to provide encouragement. Friends can invite other users to be part of a Group. Groups will have access to special Achievements and Points bonifications when all members meet their weekly goals.
Messaging and Commenting Commenting and instant messaging are features common in Social Networks but it was decided against implementing them into the platform because of the difficulty of moderating polite behavior. Patient Education Diabetes education has largely been accepted in diabetes care. Our proposed platform provides the patient with health and wellness tips. These tips, also include interesting facts about the condition to increase the patient’s awareness of the condition. The content of the different Tips of the Day is developed by an interdisciplinary team of Pediatricians, Diabetologists, Child Psychiatrists and Patient Education experts to optimize communication. These Tips are less than 260 characters in length to keep the patient from feeling burdened with information. The time of the day at which the Tips are displayed can be set by the patient and it’s a feature that can be turned off. The patient can also explore the list of previously displayed Tips for later reference. A sample Tips of the Day can be found in Appendix A. Table 6. Alternative solutions considered There’s been several tries to bridge the gap generated between prescription and patient compliance. A common theme among the different therapeutic approaches is the creation of a dynamic and interdisciplinary support framework for the patient. Telemonitoring Gómez el al.56 describe the DIABTel telemedicine system to complement the daily care and intensive management of diabetic patients. There was a trend towards HbA1c improvement during DIABTel use with no incidence in the number of hypoglycaemias. Bujnowska et al.57 published a study where a telemedicine support system for diabetes management was compared with standard monitoring. There was no significant difference in haemoglobin A(1c) between telemonitoring and the traditional group of diabetic patients during the survey. Family Environment Wysocki et al.58's work with Behavioral Family Systems Therapy for Diabetes (BFST-D) aims to assist parents and adolescents as they work on communication skills, problem solving, and minimizing family conflict in relation to diabetes. This paper showed significant improvement in the quality of family interactions, family communication, and problem solving with BFST-D. Social Support Grey et al.59 studied a form of cognitive behavioral therapy that they called coping skills training (CST) in 12–20-year-olds with T1D who were beginning intensive insulin therapy. The authors reported better glycemic control and quality of life with the addition of CST to intensive therapy. Peters et al.60 shows that the adolescents with diabetes identified various supportive behaviors of friends, particularly concerning emotional support: treating them normally, showing interest, having fun, providing a distraction, and taking their diabetes into account. Fear of stigmatization and sense of autonomy withheld some adolescents with diabetes from soliciting more support.
Strengths and weaknesses analysis The use of game elements as a way of motivating patients is an interesting approach as it provides patients with instant feedback and positive reinforcements. This, we believe, will allow patients to conceptualize their condition in more manageable units and will seem like a less tiresome task. Balancing the point system is a matter that requires cautions otherwise patients might place too much emphasis in obtaining points and feel inclined to exploit the system. Integrating a home telemonitoring system with our Hospital’s PHR adds value as the monitoring tool will not be a standalone device but part of a larger system that will significantly improve the quality of care offered to patients. While reviewing the literature, however, we realized that at this time our platform lacks a way to allow family participation. This is the subject of an ongoing discussion within our team as to what would be the proper role and the right approach. Although the alternative solutions are not without merit our platform attempts a more integrative approach to the patient’s condition. An illustrative comparison between our platform’s strengths and weaknesses against the alternative solutions explored can be found in Appendix A. Table 7. Implementation and dissemination plan Our Hospital’s Chronic Disease Program (CDP), Department of Pediatrics and Endocrinology Service will work with the Healthcare IT department during the planning, structuring, software development and the process of implementation and validation of a pilot. Given possible legal and ethical implications both the Hospital’s Legal Department and the Bioethics Committee will stay informed of the project’s coming and goings. Implementation of the platform will follow a three stage process. In Stage 1 we will perform a functionality test with 20 healthy adults in order to validate the process and operation of the platform. Stage 2 will consist of a pilot test with 20 teenagers assessing flow and ease of use, once this pilot test is completed we will move to Stage 3. Stage 3 involves the massive dissemination and large scale implementation of the platform to susceptible and willing patients. Diffusion and dissemination of the platform will be carried out through the Hospital’s usual channels of communication such as newsletters mailing, Hospital magazines, website, internal TV, etc. The use of other social media is being considered to capture the interest of adolescents participating in the study. Evaluation plan As this is a patient-oriented platform, their input and feedback is crucial. Once our solution is implemented the idea is to advance on several assessment lines. We will assess user satisfaction through a SUS questionnaire, and conduct qualitative studies using semi structured interviews. To optimize the processes of patient interaction with the tool and generate an intuitive and easy to use application, we will perform regular assessments of interface usability. Finally, a randomized controlled trial will be conducted to evaluate clinical outcomes, based on clinical parameters involved in the protocol, in order to assess the platform's impact.
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