Mapping Users’ Experience of a Family History and Genetic Risk Algorithm Tool in Primary Care

Abstract

<b><i>Introduction:</i></b> The development of a family history (FH) questionnaire (FHQ) provides an insight into a patient’s familiarity of a trait and helps to identify individuals at increased risk of disease. A critical aspect of developing a new tool is exploring users’ experience. <b><i>Objective:</i></b> The objective of this study was to examine users’ experience, obstacles and challenges, and their views and concerns in the applicability of a new tool for determining genetic risk in Slovenia’s primary care. <b><i>Methods:</i></b> We used a qualitative approach. The participants completed a risk assessment software questionnaire that calculates users’ likelihood of developing familial diseases. Audio-taped semi-structured telephone interviews were conducted to evaluate their experience. There were 21 participants, and analyses using the constant comparative method were employed. <b><i>Results:</i></b> We identified 3 main themes: obstacles/key issues, suggestions for improvements, and coping. The participants were poorly satisfied with the clarity of instructions, technical usability problems, and issues with the entry of relatives’ data. They expressed satisfaction with some of the characteristics of the FHQ (e.g., straightforward and friendly format, easy entry, and comprehension). They suggested simpler language, that the disease risk should be targeted toward the disease, that the FHQ should include patient-specific recommendations, and that it should be part of the electronic medical records. When discussing what would they do with the results of the FHQ, the participants used different coping strategies: active (e.g., seeking information) or passive (e.g., avoidance). <b><i>Discussion/Conclusion:</i></b> User experience was shown to be a synthesis of obstacles, overcoming them with suggestions for improvements, and exploration of various coping mechanisms that may emerge from dealing with the stressor of “being at risk.”

User experience of a family health history chatbot: A quantitative analysis

“…Web-based, patient-facing tools have been developed to systematically collect and organize FHx outside of the provider's office, improving efficiency of clinical visits while increasing completeness and accuracy. [1][2][3][4] These tools allow users to generate pedigree, collaborate with family, provide decision support, and support health information technology (HIT) integration. Automated conversational agents (chatbots) have emerged as a promising approach for health data collection.…”

“…Research has focused on understanding user experience and preferences employing qualitative and experimental approaches such as surveys, interviews, comparative assessments, and randomized control trials. [2][3][4]6,9 The purpose of this study is to explore quantitative software telemetry (collection of software usage information) to assess granular, objective user behaviors, abandonment (where and when a user leaves the FHx tool) trends, and time to complete various steps to identify potential pitfalls and areas of user experience improvement. 10 To the best of our knowledge, no studies have explored user behaviors of completing FHx assessments using telemetry data.…”

“…1 Research has found that FHx collection tools can produce poor user satisfaction with respect to assessment format, data-input method, and complex clinical jargon. 2 Patients’ incomplete knowledge of family members’ health history and confidentiality concerns remain as barriers to FHx tool adoption. 7,8 In addition, factors such as time taken to collect comprehensive FHx and types and amount of data inputs could also lead to under-utilization and poor user experience.…”