122 Personalized illness? how self-monitoring and measuring can turn otherwise well people into patients. A study protocol

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Abstract

Objectives

Among lay people, notions of personalized medicine create underlying assumptions of individually targeted treatments and promises of detecting and thus curing severe illnesses, according to a previous pilot study. However, there is currently only sparse knowledge as to the dimensions and impact of personalized medicine in lay people’s perception of well-being and illness and how notions of personalized medicine affect patients’ relations to the primary health provider, in Denmark the general practitioners (GPs). The hypothesis of this study is that general practice experiences a growing tendency of otherwise healthy patients seeking medical advice based on self-monitoring, measuring and testing, which create risk of overdiagnosis.

Method

The study will be carried out as a combination of a survey targeting GPs and an ethnographic qualitative study among GPs and apparently healthy patients in Denmark. The survey study will map out GPs’ perceptions of, experiences with and notions of personalized medicine and how they expect personalized medicine to affect the roles in general practice in years to come. Following the analyses of the questionnaire a qualitative study is designed to observe and individually interview selected GPs in order to get a deeper understanding of their experiences. In addition, an ethnographic study of 20 apparently healthy patients in general practice, using various forms of self-monitoring will be observed, followed and interviewed for a period of one year. This will uncover lay perceptions of personalized medicine and how, when and why these people chose to self-monitor and measure bodily functions and how it affect their relation to the GP.

Results

A pilot study of short individual interviews with 12 GPs conducted in September 2017 showed that especially GPs in urban areas experience a growing interest from patients in personalized medicine. The majority of these GPs expressed negative associations with this development. One said ‘There are no regulations in this area, it’s the wild west’, stressing the lack of control with for instance self-monitoring apps. Another GP felt that personalized medicine was creating overdiagnosis. She said: ‘This [self-monitoring, DNA mapping etc.] turns healthy people into patients. If it continues this way, I’m quitting as a GP’. This study is expected to gain a deeper and more nuanced understanding of both GPs and healthy patients’ perceptions of and experiences with personalized medicine. It will uncover the spreading of experiences with, but also challenges as well as benefits relating to personalized medicine.

Conclusions

The study is expected to provide novel data and understandings of personalized medicine in a societal perspective. The findings are expected to uncover possible paths of overdiagnosis in general practice as well as knowledge, which can guide the future adaption of patients’ use of self-monitoring and the like aspects of personalized medicine.

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