Sharing Patient Lifelog Data With the Primary Care Team for Two Patient Populations: Preventative Care & Chronic Disease Management

Mobile applications have been developed to help people keep “lifelogs” of their personal data, including their physical activity, sleep, and food consumption. This patient-generated data--either journaled by individuals or objectively measured through sensors in phones and other devices--has the potential to improve the accuracy and precision of data available for use in clinical care. However, the ability for individuals or medical teams to make use of these data to improve wellness or quality of healthcare has not kept pace with the ability to collect it. There is little research on how these data could be best integrated to improve care. Systematic incorporation of user perspectives on the design of features to integrate patient data into health providers’ practices will be key to ensuring their adoption and effectiveness.

This project employed human-centered design to study patient and provider needs and attitudes for using patient-generated health data to prevent and manage chronic illness. The project focused on patients with irritable bowel syndrome (IBS) and weight management because both have high individual and economic costs and offer an opportunity for large public health impact.

The specific aims of the project were as follows:

• Understand patient attitudes, values, and goals for sharing lifelog data, including food, physical activity, stress, and if applicable, symptom data, with their health providers. 
• Understand provider attitudes, values, and needs for integrating patient-collected data into care. 

In order to understand current practices, researchers surveyed and interviewed patients. Providers participated in interviews and reviewed patient food and symptom journals. The results were applied to the design of novel systems: 1. a photo-based food diary for patients with IBS and weight management goals and 2. a system that walks patients with IBS through the process of configuring, conducting, and understanding the results of a food trigger self-experiment. Investigators developed data analysis tools to support the use of patient-collected data and evaluated their usability and feasibility among providers and patients.

Results indicated that providers and patients currently face considerable barriers to using patient-generated health data, including unclear communication and coordination around tracking, limited time, and tools designed for individual rather than collaborative use. Many patients reported wanting provider input to help make sense of the data. In both the healthy eating and IBS use cases, users found that collecting and collaboratively reviewing the data was helpful for identifying patterns and developing actionable plans to address individual health goals. Researchers identified transferable design principles and opportunities for integrating patient-collected data in care, which can inform current clinical practice, the design of health and wellbeing applications, and future research projects.