Governing Personalized Health: A Scoping Review

Genetic research is advancing rapidly. One important area for the application of the results from this research is personalized health. These are treatments and preventive interventions tailored to the genetic profile of specific groups or individuals. The inclusion of personalized health in existing health systems is a challenge for policymakers. In this article, we present the results of a thematic scoping review of the literature dealing with governance and policy of personalized health. Our analysis points to four governance challenges that decisionmakers face against the background of personalized health. First, researchers have highlighted the need to further extend and harmonize existing research infrastructures in order to combine different types of genetic data. Second, decisionmakers face the challenge to create trust in personalized health applications, such as genetic tests. Third, scholars have pointed to the importance of the regulation of data production and sharing to avoid discrimination of disadvantaged groups and to facilitate collaboration. Fourth, researchers have discussed the challenge to integrate personalized health into regulatory-, financing-, and service provision structures of existing health systems. Our findings summarize existing research and help to guide further policymaking and research in the field of personalized health governance

Is there a “pandemic effect” on individuals' willingness to take genetic tests?

In this cross-sectional, semi-longitudinal and quasi-experimental study, our goal was to determine the effect of data storage conditions on willingness to take a genetic test. We compared individuals’ preferences regarding how they want to store health data collected from genetic tests through two survey experiments fielded in Switzerland in March 2020 and January 2022. We tested for differences whether genetic data are presented as private goods or public goods. Results confirm our initial research expectation: more control over storage increases willingness, so does framing genetic data as private good. However, they also show that the willingness to take a genetic test has noticeably increased between 2020 and 2022. Our results point toward a “pandemic effect” which would have increased willingness take a genetic test, nevertheless, more data are needed to understand this putative effect

Public Opinion on Health Care and Public Health

In the health policy literature, scholars and practitioners distinguish broadly between health care and public health interventions. Both types of policies are indispensable to deal with pressing health problems. Nevertheless, we know very little about how individuals support the principle logic behind these two approaches to health policy. In this paper, we analyze empirically whether individuals prefer either a health care-oriented or a public health-oriented approach to health policy. In addition, we explore political and socio-demographic factors explaining individuals’ choices. To conduct this analysis, we use multivariate regression analysis based on data (N = 5 442) from the 2018 wave of the Swiss Household Panel Survey. The survey contains high-quality data from a representative sample of the population living in Switzerland. Our results demonstrate that a majority of citizens prefers public health policies rather than policies ensuring access to health care. Especially, individuals with higher out-of-pocket payments in their health insurance plan support a public health over health care policy approach. Furthermore, those who prefer environmental protection over economic growth support public health over health care policy

How does regulating doctors’ admissions affect health expenditures? Evidence from Switzerland

Background: Cost containment is a major issue for health policy, in many countries. Policymakers have used various measures to deal with this problem. In Switzerland, the national parliament and subnational (cantonal) governments have used moratoriums to limit the admission of specialist doctors and general practitioners. Methods: We analyze the impact of these regulations on the number of doctors billing in free practice and on the health costs created by medical practice based on records from the data pool of Swiss health insurers (SASIS) from 2007 to 2018 using interrupted time series and difference-in-differences models. Results: We demonstrate that the removal of the national moratorium in 2012 increased the number of doctors, but did not augment significantly the direct health costs produced by independent doctors. Furthermore, the reintroduction of regulations at the cantonal level in 2013 and 2014 decreased the number of doctors billing in free practice but, again, did not affect direct health costs. Conclusions: Our findings suggest that regulating healthcare supply through a moratorium on doctors’ admissions does not directly contribute to limiting the increase in health expenditures

Designing Privacy in Personalized Health: An Empirical Analysis

A crucial challenge for personalized health is the handling of individuals’ data and specifically the protection of their privacy. Secure storage of personal health data is of paramount importance to convince citizens to collect personal health data. In this quasi-experimental, cross-sectional study, we test individuals’ willingness to produce and store personal health data, based on different storage option whether this data is presented as common good or private good. In this study, we focus on the non-medical context with two means to self-produce data via connected devices that record physical activity or elect to take a genetic test to appraise risks of diseases. We use data from a survey experiment fielded in Switzerland in March 2020 and perform regression analyses on a representative sample of Swiss citizens in the French- and German-speaking cantons. Our analysis shows that respondents are more likely to use both apps and tests when data are presented as private good that would be stored by individuals themselves. Our results demonstrate that concerns regarding the privacy of personal heath data storage trumps any other variables when it comes to the willingness to use personalized health technologies. Individuals prefer a data storage format where they retain control over the data. Ultimately, this study presents results susceptible to inform decision-makers in designing privacy in personalized health initiatives