Decision Making In Online Health Communities : What Can We Learn From Member Choice Inquiries

By 2015, 30.3 million American people or 9.4% of the US population had diabetes. Diabetes management can be challenging as patients experience evolving information needs around complex lifestyle and medical decisions. As patients’ condition progress, they make decisions by identifying or evaluating choices. These choice inquiries along the decision-making process present a valuable research opportunity to uncover and support their information needs. As an increasing number of patients visit online health communities (OHCs) to fulfill their information needs, we conducted a qualitative content analysis of 1000 diabetes community posts with a goal to identify choice inquiries and analyze their contents. We found choice inquiries occurred in approximately 20% of member initiated posts. Medication and treatment, blood sugar control, and food was the most popular topics members make decisions upon. The top list of triggers that make members post choice inquiries included having blood sugar problems, desiring for more information and forming specific goals. We present direction to better support decisional needs in online health communities. Introduction Chronic illnesses are characterized by their lack of cure when patients must constantly manage and receive care throughout their lifetime. Upon diagnosis, patients with diabetes must absorb information, change habits, and adopt new behaviors. As their condition progresses, they make decisions that affect their health on a day-to-day basis, such as food and exercise choices. Even as patients achieve control of their diabetes, new issues come up and they need to readjust their routines and behavior. Prior research showed inadequate information was provided to patients after their initial diagnosis. Patients are left with questions regarding lifestyle modifications and other required changes, and express high desires for gaining medical knowledge. One critical source of information for patients is Online health communities (OHCs) because of the vast amount of anecdotal information available. We call the moments of decision making process where alternatives are developed and evaluated choice inquiries. Since OHCs are filled with collective knowledge (e.g., members often review new diabetes-related products in OHC) and the potential to support patients in their chronic illness management, we conducted a qualitative study on an online diabetes community. We uncovered decisional needs of members and the context surrounding these needs. In the end, we present insight on how to better support decision making for patients with chronic conditions. Background Diabetes management In the US alone, in 2015, 30.3 million people were diagnosed with diabetes. Most people with chronic illnesses such as diabetes do not receive appropriate or effective chronic illness management from primary care providers. The day-to-day management of diabetes falls on patients themselves. As diabetes has a substantial and increasing impact on quality of life, patients need to become more educated partners in their care. Chronic conditions such as diabetes progresses over time, resulting in evolving information needs from patients. Corbin and Strauss proposed the chronic illness trajectory framework to explain the evolving nature of patients’ and families’ needs, with “trajectory” referring to the course of a chronic disease in its different stages and phases. As patients transition through phases, they inquire about their choices to decide on the next course of action. Consequently, their inquiries present an opportunity to provide informational support to aid informed decisionmaking, a process that involves various resources and understanding pros and cons of different choices. Patient decision-making The decision-making process is a complex construct, where the level of rationality involved in the process is still being debated. For example, normative theories of decision-making (e.g., subjective expected utility theory) assumes patients consider decisions rationally and evaluate the risks and benefits of all available interventions. Descriptive theories of decision-making (e.g., prospect theory) on the other hand describes how cognitive biases can cause people to deviate from the rational ideal. The Dual-Process Theory of decision-making states people make decisions either intuitively or rationally where the latter results in less cognitive bias. While decision-making theories highlight the various factors that influence people’s decision-making behavior, the decision-making process models share in common the steps leading to making a decision: establishing