A national data sharing solution for the prevention and treatment of obesity—a qualitative study of stakeholders’ needs

Abstract

Study objectives: Obesity-related health data is needed for studies and precision medicine, but existing registers, medical chart systems, and digital platforms are seldom compatible. Before creating improved ways of sharing health data, this study aimed to gather opinions, experiences, and wishes from stakeholders that may use obesity-related health data: healthcare, researchers, people with overweight or obesity, the pharmaceutical industry, and IT-specialists. Methods: We performed semistructured interviews with 28 stakeholders and analyzed qualitative text data with inductive content analysis. We grouped the suggested parameters in categories. Results: Time efficient data entering was perceived crucial. Access to health data was important to all participants. Some parameters, such as age, BMI, and sex were requested by all stakeholders. Other data were stakeholder specific, such as population-specific laboratory references, suggested by healthcare professionals only. For people with overweight or obesity, ability to share data with healthcare staff about fitness level or previous weight loss attempts, was important. Conclusion: The results from this study can be used in the design and implementation of a national health data sharing solution that may be used for precision healthcare use and to evaluate and guide obesity treatment and preventive measures. Data parameters requested by all populations, such as BMI, sex, and age, should be prioritized when designing a data solution. Ability for individuals with overweight or obesity to share health data, may improve healthcare appointments and reduce weight stigma.