The funhouse mirror: the I in personalised healthcare

AbstractPrecision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates of N = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension of collecting data. We propose the fun-house mirror as a metaphor for the use of personal health data; each health data source yields a particular type of image that can be regarded as a ‘data mirror’ that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided.

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Smart Mask – Wearable IoT Solution for Improved Protection and Personal Health

10.36227/techrxiv.14540472.v1 ◽

2021 ◽

Author(s):

Jarkko Hyysalo ◽

Sandun Dasanayake ◽

Jari Hannu ◽

Christian Schuss ◽

Mikko Rajanen ◽

...

Keyword(s):

Large Scale ◽

Personal Data ◽

Health Data ◽

Future Research ◽

Personal Health ◽

Public Data ◽

Research Problems ◽

Health Related ◽

Treatment Plans ◽

And Control

<div> <div> <div> <p>The use of face masks is an important way to fight the COVID-19 pandemic. In this paper, we envision the Smart Mask, an IoT supported platform and ecosystem aiming to prevent and control the spreading of COVID-19 and other respiratory viruses. The integration of sensing, materials, AI, wireless, IoT, and software will help gathering of health data and health-related event detection in real time from the user as well as from their environment. In larger scale, with the help of AI-based analysis for health data it is possible to predict and decrease medical costs with accurate diagnoses and treatment plans, where comparison of personal data to large-scale public data enables drawing up a personal health trajectory, for example. Key research problems for smart respiratory protective equipment are identified in addition to future research directions. </p> </div> </div> </div>

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Big Data, precision medicine and private insurance: A delicate balancing act

Big Data & Society ◽

10.1177/2053951719830111 ◽

2019 ◽

Vol 6 (1) ◽

pp. 205395171983011 ◽

Cited By ~ 7

Author(s):

Alessandro Blasimme ◽

Effy Vayena ◽

Ine Van Hoyweghen

Keyword(s):

Big Data ◽

Precision Medicine ◽

Insurance Industry ◽

Private Insurance ◽

Economic Value ◽

Medical Science ◽

Personal Data ◽

Phenotypic Data ◽

Related Data ◽

Health Related

In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical Big Data or to health-related information derived from it would discourage people from enrolling in precision medicine studies. Should that be the case, the economic value of personal data for the insurance industry would end up affecting the public value of data as a scientific resource. In what follows we articulate three principles – trustworthiness, openness and evidence – to address this problem and tame its potentially harmful effects on the development of precision medicine and, more generally, on the advancement of medical science.

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Data Control and Surveillance in the Global TB Response: A Human Rights Analysis

Law, Technology and Humans ◽

10.5204/lthj.v2i1.1487 ◽

2020 ◽

Vol 2 (1) ◽

pp. 107-123

Author(s):

Kat Albrecht ◽

Brian Citro

Keyword(s):

Human Rights ◽

Personal Data ◽

Health Data ◽

Case Finding ◽

Personal Health ◽

Active Case Finding ◽

Public And Private ◽

Active Case ◽

Data Control ◽

Colonial Histories

The global response to the tuberculosis (TB) epidemic is generating copious amounts of personal health data. The emerging emphasis on the use of active case finding and digital adherence technologies in the TB response will increase the amount and expand the kind of data produced and used by public and private health officials. The production of personal data in high TB burden countries, in particular, must be considered in light of their colonial histories. In doing so, we argue that interventions to eliminate TB at global and national levels are ushering in a new era of data colonisation and surveillance in the name of public health. This, in turn, raises critical concerns for the human rights of people affected by TB, many of whom belong to vulnerable or marginalised groups. We examine the normative and legal content for a set of international human rights critical to the TB response, highlighting how each right implicates the production and use of personal health data. We also demonstrate that these rights are, by and large, enshrined in the constitutions of each high TB burden country. Finally, we use these rights to analyse active case finding and digital adherence technologies to pinpoint their unique data risks and the threats they pose to the human rights of people affected by TB.

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Visualizing the Provenance of Personal Data using Comics

10.20944/preprints201712.0153.v1 ◽

2017 ◽

Author(s):

Andreas Schreiber ◽

Regina Struminski

Keyword(s):

Personal Data ◽

Cloud Service ◽

Smartphone Application ◽

Health Data ◽

Personal Health ◽

Data Provenance ◽

Visualization Technique ◽

Comic Strips

Personal health data is acquired, processed, stored, and accessed using a variety of different devices, applications, and services. These are often complex and highly connected. Therefore, use or misuse of the data is hard to detect for people, if they are not capable to understand the trace (i.e., the provenance) of that data. We present a visualization technique for personal health data provenance using comics strips. Each strip of the comic represents a certain activity, such as entering data using a smartphone application, storing or retrieving data on a cloud service, or generating a diagram from the data. The comic strips are generated automatically using recorded provenance graphs. The easy-to-understand comics enable all people to notice crucial points regarding their data such as, for example, privacy violations.

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Health Data Cooperatives – Citizen Empowerment

Methods of Information in Medicine ◽

10.3414/me13-02-0051 ◽

2014 ◽

Vol 53 (02) ◽

pp. 82-86 ◽

Cited By ~ 72

Author(s):

D. Kossmann ◽

A. Brand ◽

E. Hafen

Keyword(s):

Precision Medicine ◽

Health Data ◽

Environmental Data ◽

Functional Health ◽

Personal Health ◽

Research Information ◽

Data Repositories ◽

Cooperative Model ◽

Targeted Interventions ◽

Health Related

SummaryIntroduction: This article is part of a Focus Theme of Methods of Information in Medicine on Health Record Banking.Background: Healthcare is often ineffective and costs are steadily rising. This is in a large part due to the inaccessibility of medical and health data stored in multiple silos. Further -more, in most cases molecular differences between individuals that result in different susceptibilities to drugs and diseases as well as targeted interventions cannot be taken into account. Technological advances in genome sequencing and the interaction of ’omics’ data with environmental data on one hand and mobile health on the other, promise to generate the longitudinal health data that will form the basis for a more personalized, precision medicine.Objectives: For this new medicine to become a reality, however, millions of personal health data sets have to be aggregated. The value of such aggregated personal data has been recognized as a new asset class and many commercial entities are competing for this new asset (e.g. Google, Facebook, 23andMe, PatientsLikeMe). The primary source and beneficiary of personal health data is the individual. As a collective, society should be the beneficiary of both the eco -nomic and health value of these aggregated data and (health) information.Methods: We posit that empowering citi -zens by providing them with a platform to safely store, manage and share their health-related data will be a necessary element in the transformation towards a more effective and efficient precision medicine. Such health data platforms should be organized as co -operatives that are solely owned and controlled by their members and not by shareholders. Members determine which data they want to share for example with doctors or to contribute to research for the benefit of their health and that of society. Members will also decide how the revenues generated by granting third parties access to the anonymized data that they agreed to share, should be invested in research, information or education.Results: Currently no functional Health Data Cooperatives exist yet. The relative success of health data repositories such as 23andme and PatientsLikeMe indicates that citizens are willing to participate in research even if – and in contrast to the cooperative model – the commercial value of these data does not go back to the collective of users.Conclusions: In the Health Data Cooperative model, the citizens with their data would take the center stage in the healthcare system and society would benefit from the health-related and financial benefits that aggregation of these data brings.

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EL CONSENTIMIENTO PARA TRATAMIENTO DE DATOS PERSONALES DE SALUD EN TIEMPOS DEL COVID-19

YachaQ Revista de Derecho ◽

10.51343/yq.vi11.366 ◽

2020 ◽

pp. 145-164

Author(s):

RAÚL VÁSQUEZ RODRÍGUEZ

Keyword(s):

Data Processing ◽

Data Protection ◽

Personal Data ◽

Emergency Situation ◽

Health Data ◽

Fundamental Rights ◽

Health Protection ◽

Personal Health ◽

Constitutional Development ◽

Personal Data Protection

El presente artículo se centra en la interacción entre los derechos fundamentales a la protección de los datos personales y a la protección de la salud, en el marco de la lucha contra el covid-19 en el Perú. Se inicia el estudio con el desarrollo constitucional de tales derechos, para luego revisar sus respectivas normas legales, teniendo como objetivo esclarecer una de las herramientas básicas que permiten superar los conflictos que se presenten entre ambos en la presente circunstancia de emergencia nacional por el covid-19, concerniente al consentimiento para el tratamiento de datos personales. Adicionalmente, se estudiarán dos casos de tratamiento de datos personales en acciones de prevención del covid-19, que evidencian la pacífica coexistencia entre los derechos constitucionales y los intereses surgidos de la actual situación sanitaria. This paper focuses on interaction between fundamental rights of personal data protection and health protection, in the frame of fighting against covid-19 in Peru. This research begins with constitutional development of those rights, in order to review their related laws, having like an objective clarifying one of their basic legal resources which allow overcome any struggling between those rights during the current emergency state due to covid-19, related to c onsent for personal health data processing. In addition, twocases of personal data processing in preventing covid-19 actions will be studied, which show a peaceful interaction between aforementioned rights and interests arising from current emergency situation.

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Assessment of Nursing Students’ Attitudes Towards Recording and Protecting Patients’ Personal Health Data: A Descriptive Study

Galician Medical Journal ◽

10.21802/gmj.2021.3.3 ◽

2021 ◽

Vol 28 (3) ◽

pp. E202133

Author(s):

Sebahat Atalıkoğlu Başkan ◽

Papatya Karakurt ◽

Necla Kasımoğlu

Keyword(s):

Nursing Students ◽

Data Sharing ◽

Sample Selection ◽

Personal Data ◽

Attitude Scale ◽

Health Data ◽

Personal Health ◽

Academic Level ◽

Significant Difference ◽

Students Attitudes

Introduction. Since health information is considered as sensitive personal data and requires more careful protection, healthcare professionals need to be careful about this issue. The objective of this research was to determine nursing students’ attitudes towards recording and protecting patients’ personal health data. Materials and Methods. The population of this descriptive research consisted of 450 students who studied at the Department of Nursing, Faculty of Health Sciences, Erzincan Binali Yildirim University. Sample selection was not used, and the research was completed with 374 students who were continuing education and who were accepted to participate in the research. Descriptive Information template and Attitude Scale for Recording and Protecting Personal Health Data for nursing students were used as data-collection instruments. The numbers, percentage, mean, standard deviation, non-parametric tests (the Mann-Whitney U test and the Kruskal-Wallis test) were used in data analysis. Results. Among our research participants, 68.4% of the students were females; 28.1% of the students were freshmen; 69% of the students were graduates of Anatolian high schools. Approximately 72.5% and 52.9% of the participants stated that they were aware of the concept of “personal data” and “personal health data” , respectively. The mean score of nursing students on the Attitude Scale for Recording and Protecting Personal Health Data was 3.97±0.71. The means scores obtained from subscales were as follows: 3.91±0.72 for Personal Health Data Information, 4.15±0.80 for Legal Information, 4.05±0.94 for Legal Data Sharing, 3.90±0.80 for Personal Health Data Sharing, and 3.77±0.33 for Recording of Personal Health Data, respectively. A statistically significant difference was found between the total scale and subscale scores of the students regarding their academic level. Conclusions. Students were found to have a positive attitude towards recording and protecting personal data. Increasing the responsibilities and raising awareness of the students for the protection of personal health data during their study is suggested to be important.

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Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint

BioMed Research International ◽

10.1155/2017/7147212 ◽

2017 ◽

Vol 2017 ◽

pp. 1-4 ◽

Cited By ~ 3

Author(s):

Ester A. Rake ◽

Marleen M. H. J. van Gelder ◽

David C. Grim ◽

Barend Heeren ◽

Lucien J. L. P. G. Engelen ◽

...

Keyword(s):

Medical Research ◽

Personal Health Record ◽

Health Data ◽

Ethical Review ◽

Personal Health ◽

Review Committee ◽

Semistructured Interviews ◽

Research Platform ◽

Share Data ◽

Data Source

Background. Health data personally collected by individuals with wearable devices and smartphones is becoming an important data source for healthcare, but also for medical research. Objective. To describe a new consent model that allows people to control their personally collected health data and determine to what extent they want to share these for research purposes. Methods. We developed, in close collaboration with patients, researchers, healthcare professionals, privacy experts, and an accredited Medical Ethical Review Committee, an innovative concept called “personalized consent flow” within a research platform connected to a personal health record. The development was an iterative process with informal meetings, semistructured interviews, and surveys. The final concept of the personalized consent flow was reviewed by patients and improved and approved by the same patients in a focus group. Results. This concept could result in optimal control for individual users, since they will answer questions about how they will share data. Furthermore, it enables users to collect data for specific studies and add expiration dates to their data. This work facilitates further discussion about dynamic and personalized consent. A pilot study with the personalized consent model is currently being carried out.

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