HomeHealth Data : What's in a name ?

Health Data : What's in a name ?

Qu'est-ce qu'une donnée de santé ?

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Published on Monday, July 18, 2016 by Céline Guilleux

Summary

This call for proposals aims at providing insights one the very concept of health data: their definition, their protection, the respective roles of actors involved and, on a broader perspective, their destination, the frontier between health and well-being, confidential and public, etc. The objective is to foster exchanges and lead to innovative transdisciplinary research opportunities on this complex topic, in order to better understand the future of health.

Announcement

Argument

At a time when medical practices are growing ever more numerous and diversified, both inside and outside the walls of traditional health institutions, and are being carried out on a wide variety of individualized and connected devices, the question of data protection shall be addressed in an urgent, yet careful, way. It has already found some answers on the technical front, namely, encryption for information safety. But another wider, more fundamental question preludes: How to define health data and, consequently, what there is to protect in the first place ?

Health data are usually apprehended on a global point of view: every medical and/or relative to generic health determinant data, and to the health of a person, a group of persons (couple, family, neighbourhood, city, region, ethnic group, country, etc.) or a population. They are being used for monitoring and evaluation of heath systems and policies, provisional budgeting, conducing health prospective and cross-checking indicators.

In France, a draft law on health suggests the creation of a “National Health Data System” (“Système national des données de santé”, SNDS) that aims at unifying existing databases and would be managed by the “National Salaried Employees’ Health Insurance Fund” (“Caisse nationale de l'assurance maladie des travailleurs salariés”, CNAMTS), which would be responsible for making a part of these data publicly available (“open data”), namely those of the hospital system, of the health insurance information system, causes of death and some data about insurance refunding. This ongoing project doesn’t meet a warm welcome from practitioners.

Recent technological breakthroughs leading to an increasing personalisation of health are driving us to focus our attention not on these global data, but on individual health data and, therefore, on their personal nature. Moreover, the widespread of embedded devices (smartphones, connected watches and wristbands, electronic “coaches”, etc.) contribute to the blurring of the frontier between health data and well-being data[1]. The tools of the so-called “Quantified Self” measure and capture a lot of physiological data (physical activity, quality of sleep, evolution of weight, etc.) which, if they don’t fall within medical records stricto sensu, are nonetheless information that can give clues on the health state of an individual, a group of individuals or a population. These data are captured by the service provider who can aggregate, valuate and/or monetize them afterwards, usually without the user being fully aware of it.

Nowadays, health data are no longer considered as “personal” as soon as they are anonymized in such a way that it makes impossible the re-identification of the patient. However, this notion of re-identification is evolving and has to be questioned on a regular basis. This is mostly due to the power of data mining softwares that can enable, through the cross-checking of data available to Internet service providers or to some websites, the reconstitution of an individual profile from scattered and unprotected data, thus opening the way for commercial and marketing abuses.

The notion of “sensitive data” has been introduced to tackle this issue: data are called “sensitive” if they are “particularly susceptible to enable a re-identification” (dates of medical care, zip code, month and year of birth, date of death, etc.). Note that these data, especially zip code and birth date, hardly count as health data at first sight.

This call for proposals aims at providing insights one the very concept of health data: their definition, their protection, the respective roles of actors involved and, on a broader perspective, their destination, the frontier between health and well-being, confidential and public, etc. The objective is to foster exchanges and lead to innovative transdisciplinary research opportunities on this complex topic, in order to better understand the future of health.

The submissions will have to be part of one or some of the following themes:

Theme 1. Definition

Health data epistemology; regulatory definitions; health vs well-being; etc.

Health data can be divided in several types: statistical data relative to general public health indicators, data relative to “extrinsic”, environmental, non personal factors, data relative to the contextualization of an individual’s health and her psycho-social integration, some genetic traits, data and indicators relative to public health strategy and policy, personal medical (identifiable and identified) data. There is a continuum from personal to general data which applies nowadays to the so-called “well-being” data (which are gathered by the aforementioned connected devices).

While the very notion of health data isn’t precisely defined, a broad definition has reached a consensus in Europe. A working paper, written in 2007 by the G29 (or “Article 29 Data Protection Working Party”), suggested maintaining a broad approach when it comes to health data. They define them as data that have “a clear and close link with the description of the health status of a person” including alcohol and drugs consumption, etc. A European draft law on data protection widens this definition but stating that falls under health data category “every information relative to the physical or mental health of a person, or to the medical service delivered to that person”.

The aim of the Theme 1 is the building of a common basis for dialogue around the concept of health data. Rankings and typologies are indeed numerous, related to regulatory texts on the national, European and global scales. This dialogue necessarily preludes the questions about health data protection and usage.

Theme 2. Actors

Emerging technologies ; Health data sources ; Roles of practicians, patients, companies ; etc.

We can identify several actors on this health data “market”: healthcare professionals (in particular via the analysis of medical prescriptions, drug sales and, in France, the work of the “Sentinelles” network), health facilities, health authorities, medical and pharmaceutical companies, medical research, researchers themselves and, of course, patients. Other less traditional actors are currently positioning themselves on the field, like companies specialized on data analysis and storage. For example, Google developed algorithm that can give real time indicators on health subject of public interest, like the spread of a flu epidemic, simply by processing the users’ requests on its search engine.

Entrepreneurs of the digital world are indeed developing more and more devices, tools and apps related to health monitoring, both for professionals and individuals. Based on a report of the consulting firm Research2guidance (2013), the market share of mobile health (M-Health) will reach 26 billions of dollars and impact 1.7 billion of people (on 3.4 billions smartphones’ owners) by 2017.

Hence, this theme aims at revealing and analysing these new inter-actors dynamics.

Theme 3. Economical and regulatory stakes

Health data marketing; anonymization; Health data protection; Public health policies; etc.

In France and Europe, outside of the medical field where health data are covered by the obligation of professional secrecy in general and medical secrecy in particular, and save from some exceptions that are clearly defined and framed, “personal health data” belong to a category of data that are forbidden to collect or process. This is obviously not the case nowadays. There is a large variety of data that differs in there degree of precision and a same protection paradigm cannot apply identically regardless of the nature of the said data. The issue of protection is a major obstacle to the development of coordinated health data management tools like e.g. the Electronic Health Record (“Dossier Médical Personnel”, DMP) which is still on hold in France since more than a decade.

Furthermore, from mobile health applications to individualized treatments, the use and processing of health data is an infinite source of benefits for drug companies, public health policies, insurers, public institutions, health facilities, Internet search engines, etc. Health data are indeed an undeniable marketing asset for the actors who possess them.

Economical stakes are huge as well. Based on a report of the National Commission on Informatics and Liberty (“Commission Nationale de l'Informatique et des Libertés” Cnil), sells of connected health devices and sensors will reach 5 billions dollars in 2017, versus more than 18 billions for services. Business models of market actors in this area largely rely on the monetization of data extracted from their users. Their business strategies consist either in gathering those data to produce targeted advertisement or selling them in a aggregated (anonymized) format to other economical actors, or to integrate them into platforms to which access can be monetized.

This theme aims at exploring these related stakes between economical valorisation, innovation and the necessity to protect the data.

Theme 4. Toward a health of data ?

Patient-physician relationship; communicational issues; subjective perception of health; etc.

Many questions can be raised about the observed inversion of the link between health and health data. From a health that produced data, we have now shifted toward a health determined by these data, and medicine gradually shifts from the “art of curing” to a science of measurement. This changes the relationship to one’s own body which is consequently viewed as a producer of date, and to the disease itself, viewed as malfunction that could be repaired just like a malfunctioning machine would be.

This view leaves little room to the expression of the patient inner feelings which could only be expressed through the unique and spoken relationships that he establishes with one’s physician and which is, nonetheless, at least as critical for the diagnosis than the mere measurement of physiological parameters. Wouldn’t neglecting the fact that ill-being has to be put into words set aside the communicational role of the curing process, while it undisputedly constitutes one of its essential dimensions? By making the individual the mere manager of one’s “health capital”, wouldn’t technologies of self quantification risk to evacuate the mental relationship that one ties with one’s own body?

This theme aims at exploring psychological and philosophical stakes of this evolution toward a health of data.

Notes

[1] Let us remind that the World Health Organisation defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (WHO, Preamble to the Constitution, 1948)

How to submit a proposal?

Proposals should include the following information:

  1. First name, last name and affiliation of the candidate
  2. Email address
  3. Type of the proposal, chosen among i) Feedback on experiences, actions, experimentations, testimony and ii) Theoretical and empirical research
  4. Title of the proposal
  5. Theme(s) of the call related to the proposal (max. 2)
  6. Description of the proposal (max. 3000 characters), which should contain i) the topic of the proposal, ii) a clear problematization, iii) methodology and empirical context and iv) the main conclusions
  7. Allowed file formats: pdf, doc, docx, odt, rtf
  8. Language: French or English

 Proposal should be sent to: colloqueisccsante@cnrs.fr

Deadline : September 30th 2016, midnight, Paris time (UTC+2)

Date

November 2016

Organising committee

  • Deborah Wallet-Wodka, maître de conférence, Université Pierre et Marie Curie
  • Edouard Kleinpeter, ingénieur de recherches, Institut des sciences de la communication (CNRS – Université Paris Sorbonne – Université Pierre et Marie Curie)

Scientific committee

  • Jean-Michel Besnier (EA rationalités contemporaines, Université Paris Sorbonne)
  • Léo Coutellec (Espace éthique Ile de France et EA Études sur les sciences et les techniques, Université Paris Sud)
  • Sébastien Damart (Dauphine Recherches en Management, Université Paris Dauphine)
  • Olivier Desbiey (équipe Innovation, Études & Prospective, Cnil)
  • Philippe Gaertner (président du Centre National des Professions de Santé et de la Fédération des Syndicats Pharmaceutiques de France)
  • Karine Gallopel-Morvan (Ecole des hautes études en santé publique)
  • Laurence Hartman (Chaire Economie et Gestion des Services de Santé, Conservatoire national des arts et métiers)
  • Janet Hoek (Université d’Otago, Nouvelle-Zélande)
  • Philippe Hulman (Directeur de l’Offre de Soins à la Caisse nationale de l'assurance maladie des travailleurs salariés)
  • Alexandre Klein (Université d’Ottawa, Canada)
  • Xavier Labbée (Avocat au barreau de Lille, Professeur à l'Université de Lille 2)
  • Daphné Leconte (directrice de l’Association française de l'industrie pharmaceutique pour une automédication responsable)
  • Pierre Lévy (Laboratoire d’économie et de gestion des organisations de santé, Université Paris Dauphine)
  • Mélanie Dulong de Rosnay (Institut des sciences de la communication, CNRS – Université Paris Sorbonne – Université Pierre et Marie Curie)
  • Antoinette Rouvroy (Centre de Recherche Information, Droit et Société, Université de Namur)
  • Marie-Paule Serre (UFR de Médecine, Université Paris Diderot)

Places

  • Paris, France (75)

Date(s)

  • Friday, September 30, 2016

Keywords

  • donnée, santé, big data, médecine, technologie, marketing, protection des données

Contact(s)

  • Edouard Kleinpeter
    courriel : edouard [dot] kleinpeter [at] cnrs [dot] fr
  • Déborah Wallet-Wodka
    courriel : deborah [dot] wallet-wodka [at] upmc [dot] fr

Information source

  • Edouard Kleinpeter
    courriel : edouard [dot] kleinpeter [at] cnrs [dot] fr

To cite this announcement

« Health Data : What's in a name ? », Call for papers, Calenda, Published on Monday, July 18, 2016, https://calenda.org/372918

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