Patients Empowered:
Painful finger pricks, shortness of breath, and chest pain may be daily disruptions in the lives of people suffering from chronic diseases such as diabetes, asthma, or heart disease. While medical devices, web solutions, and mobile apps have empowered patients to manage their conditions, little is known about how their personal values are supported or constrained by these technologies.
Majid Dadgar, a management and information systems doctoral candidate, aims to find out just what is important to patients who use self-management (SM) technology to manage their conditions in order to help designers make it easier for them.
His research contributes to a rising awareness within health care of the importance of considering human values in the design, development, and use of information technology and systems.
“Chronic disease patients are in high need of technology systems that will more effectively help them deal with intrusive health problems,” he says. “With computing prices going down, healthcare technology is more available than ever to chronic disease patients and presents an opportunity where we can make a positive impact in their management processes without interfering in their lives—it’s not just about making a profit.”
Universal values within self-management systems
Dadgar’s research dissertation, under the guidance of Professor K. D. Joshi, includes a literature review, a study testing mobile applications for diabetes patients, and a report containing recommendations and guidelines for designers to build SM systems that account for values important to chronic-disease patients.
He and Joshi completed the literature review and presented “ICT-enabled Self-management of Chronic Diseases: Literature Review and Analysis Using Value-Sensitive Design,” at the 2015 48th Hawaii International Conference on System Sciences. The paper discusses six universal values within self-management systems: hope, human welfare, universal usability, trust, privacy and autonomy. For example, the value of autonomy may been seen in a phone-based diary that enables patients to input additional information while self-managing their glucose levels, and empowers them to customize their routines and be more autonomous.
Though he says it’s very challenging to translate individuals’ values into tangible concepts, Dadgar’s analysis revealed that the value of hope is very important to the needs and desires of patients. He said studies show that patients with immediate access to web-based resources or mobile phone technology that connects them immediately to nurses, hold higher hopes about managing their chronic conditions.
He also concludes systems designed to enhance communication between chronic disease patients and health care professionals while accommodating patients’ privacy and security concerns can improve trust in the self-management process.
Trials with Glucose Buddy app shape progress
Now that the literature review is complete, Dadgar’s next step is to collect data from people coping with chronic diseases. During the summer, his subjects downloaded “Glucose Buddy,” a free mobile app commonly used by diabetes patients. He conducted an hour-long training session with participants, who then used the app on their own for a week while keeping diaries on its performance. When the week was up, Dadgar interviewed the participants to obtain feedback.
“We examined what we found from the literature review and tested the findings of human values to see to what extent they match—is it actually what individuals wanted?” he says.
Once the surveys are completed, he will draw on his background in industrial and product design and software engineering to develop new applications and design guidelines that are sensitive to the values that are important to the individuals with chronic diseases. Eventually, he would like to teach in the realm of healthcare informatics, an interface between medicine and information systems, and he would like to own and operate his own design firm to improve healthcare products.
“I have always been interested in health care,” he says. “I strongly believe we can make better information systems and technology to help people with chronic diseases. The smile on a patient’s face is priceless to me.”
His paper “ICT-enabled Self-management of Chronic Diseases: Literature Review and Analysis Using Value-Sensitive Design,” is available online at go.wsu.edu/Dadgar.