Quantified Self – interface between lifestyle and medicineThe trend toward self-measurement of one's own health using sensors and apps is on the rise. Under the direction of the ZHAW Institute for Occupational Therapy, the TA-Swiss study examines the opportunities and risks of Quantified Self.
With fitness bracelets, with built-in sensors in clothes or with a choice of over 100,000 health apps, we can now measure our lives around the clock. Regardless of the device used, self-measurement for health purposes is a serious trend. More and more people want to measure their bodily functions and analyze themselves. The measurement, transmission and analysis of such data opens a new chapter to Big Data in the field of medicine.
Background of the study
The use of devices and applications for self-measurement and self-optimization has become widespread in recent years. Here's how to use fitness wristbands. Health apps increasingly popular among Swiss population. Self-measurement is also called "quantified self" and is not just a gimmick, but stems from the urge for self-optimization. The goal of the Quantified Self movement is to gain new insights about oneself (Timmer, Kool& van Est, 2015). "Selfknowledge through numbers," as Nafus and Sherman (2014) refer to it.
Like any new development, the Quantified Self trend is associated with hopes, expectations, but also with fears and unforeseen and possibly even unintended effects. These were investigated in this study.
Objective
The aim of the study is to analyze the status and future development of the "Quantified Self" phenomenon and its implications from a societal, medical, economic, technical, legal and ethical perspective for Switzerland, to identify opportunities and risks, and to derive recommendations for decision-makers.
Study design and methods
The project is divided into four subprojects:
Actual and trend analysis
User surveys
Overall assessment of the opportunities and risks Developing recommendations
Dissemination of results.
In Subproject 1 The current status and future developments of Quantified Self in the fields of society, medicine, economy, technology, law and ethics were surveyed by means of literature and document analysis. In addition, 19 expert interviews were conducted on the trend development.
In Subproject 2 usage motives and effects of the use of Quantified Self practices were surveyed from the perspective of users and health professionals by means of focus group interviews and in a user group, and supplemented by an online survey.
In Subproject 3 an opportunity-risk analysis was carried out on the basis of the results in an interdisciplinary workshop. From this, actor-specific recommendations for action were derived.
Dissemination of the results takes place in Subproject 4 and will be continued on an ongoing basis.
Results
There are different definitions for Quantified Self. In this study, quantified self is defined as follows: Quantified self is characterized by a person actively measuring themselves with devices and applications in order to generate knowledge based on the analysis results, which helps to optimize their lifestyle and behavior in the areas of fitness, wellness or health.
Quantified Self as a trend continuation of optimization
Quantified Self is not a new phenomenon, but the continuation of various trends of self-measurement, efficiency improvement, self-optimization and self-management that have already been going on for a longer period of time. Self-measurement acts as part of this development, but also as an amplifier of these trends. Besides motives of self-optimization and health promotion, however, it is mostly curiosity and "wanting to know more" that lead users to measure themselves. Data collected and processed serve as a basis for decisions and actions, as an incentive as well as for documentation and exchange with like-minded people – rarely also as a basis for consultation with a health professional.
This trend will continue in the near future. This is due to the high prevalence and more intensive use of smartphones, the increasing sales of smartwatches in Switzerland and also with the low-threshold nature of the apps offered. Smartphones in particular will continue to be used as the preferred tool for self-measurement because various sensors for self-measurement are already integrated in them.
Players in the Quantified Self market
Healthcare players such as private insurers and pharmaceutical companies, but also numerous start-ups have entered the market. Insurance companies have also discovered the business with data and are exploring the potential. Manufacturers are increasingly trading on the personal data collected, usually without sufficiently informing users and without giving them a share of the profits.
Consumer products dominate the market
Quantified Self applications and devices are mainly consumer products and belong to the lifestyle sector. There are currently only a few products that can be classified as medical devices. In general, quantified self is used above all in health promotion-. Prevention sector seen as having great potential. However, reports show that a large proportion of downloaded health apps are no longer used after a short period of time. Similar reports exist on fitness trackers. The long-term efficacy of Quantified Self applications has yet to be proven with appropriate studies, so that they can be successfully used in the long term in a way that is demonstrably beneficial to health. The uptake of the trend in the medical field is happening hesitantly. This is mainly due to the variety of products. To do with the predominantly unclear data quality. It requires a great deal of effort from professionals to find out which products are reliable and valid, what efficacy can be expected and how the products can be used beneficially in medical and therapeutic practice.
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Opportunities for research
For research, some opportunities are seen through the use of Quantified Self: Wearing wearables can be used to make monitoring study participants easier and less expensive. In this way, large amounts of data can be obtained with little effort. By analyzing them, new knowledge can be generated about the behavior of entire population groups and new correlations can be found, allowing diseases to be detected earlier.
Lack of data protection
A major shortcoming of Quantified Self products is that no adequate data protection is guaranteed. Developers are often not familiar with the requirements necessary for this. The manufacturers of Quantified Self products in the lifestyle sector are mostly from the USA or Asia, which means that the legal relationship with customers is of a cross-border nature. Because self-measurers voluntarily send their health data abroad for analysis, their personal data can then be processed in a country that does not have data protection standards adequate to Swiss law. In addition, the manufacturers use customer data for their own purposes or sell it to third parties, e.g., in the form of a data transfer.B. for personalized advertising. The use of self-measurement technologies can also be used by employers to monitor employees without permission, by parents to monitor their children, or by insurers to assess the risk of their insureds.
Demand for a quality label
A quality label for lifestyle products can help to increase transparency and compliance with data protection and security, provide some oversight of functions and compliance management, as well as quality standards with respect to. Reliability and validity of data and data interpretation to be enforced. The label is necessary because these products, unlike medical devices, are not specifically regulated by law.
An improvement of the deficits can be expected in the future due to the total revision of the data protection law and the medical devices ordinance. Swiss customers will also benefit indirectly from the new EU General Data Protection Regulation: Its strict standards must be complied with by international providers of Quantified Self products who target the European single market with their offering, otherwise they face heavy sanctions. In addition, it can be amed that better product knowledge will encourage consumers to increasingly opt for privacy-friendly products.
A large part of the products are developed and produced by manufacturers who are exclusively from the technical sector. Health apps therefore often lack evidence-based content, d.h. they do not correspond to the current state of medical-therapeutic knowledge. Therefore, more medical-therapeutic expertise should be incorporated into the development of these applications so that the potential for health promotion and prevention can be fully exploited.
Threat of discrimination and desolidarization in social insurances
For society, the main ies to consider are possible developments toward discrimination, desolidarization, and access inequity. Self-measurement can give the false impression that each individual can fully determine and control his or her own state of health. A proliferation of incentive schemes in private health-related insurance can reinforce this impression. This can lead to a shift in values and, as a result, to discrimination against people with illness and disability and a questioning of the principle of solidarity in our society. Related to this is the question of equity of access to products that have proven to be effective, useful and economical. This should be included as a benefit in the basic insurance plan.