P E R S O N S [ in - for - ma - tion ]

Table of Content

2007-12-31T23:49:00.000-05:00

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Visual Modelling of Person Information Processes

Visual Modelling of Health Information Systems for their Administrative, Legal, Social and Ethical Management

Assessment of Personal Information Systems

The Networking of Health information Handbook for the management of ethical and social questions

The slippery path of computer-human relationships

Respect for pre-computer rituals

Metaphor and reality

Masters of Form

Variation in recruitement across site in a consent-based clinical data registry: lessons from the Canadian Stroke Network

TV documentary and radio interview on biometric identification

Informatics, Democracy and Freedoms

Democracy Struggling with Electronic Government

Beyond Privacy, the Control of the Citizens over their Computerized Lives

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Beyond Privacy, the Control of the Citizens over their Computerized Lives

2006-11-02T19:48:00.001-05:00

Par delà de la vie privée, la maîtrise des citoyens sur leurs vies informatisées [Beyond Privacy, the Control of the Citizens over their Computerized Lives]. Contribution to the New Technologies and Adult Education Workshop, organized by the work committee on news technologies and adult education of the Institut canadien d’éducation des adultes (Canadian Institute for Adult Education – ICEA) Montreal, April 8, 2003.

Abstract
The phenomenon of computerization of individuals’ lives and of their relationships with various public and private organizations is spontaneously associated the notion of privacy. But communication and information technologies infiltrate in all facets of the lives of individuals, organizations and society. Their implications are multiple and heterogeneous. Thus they cannot be covered by this single one notion. Sociologist André Vitalis expresses this in a concise formula: when technology is used to process the signs and meanings of society, “the object of data processing is social interaction”. Indeed, social interaction engulfs a reality, which is considerably much larger than the border protecting the individuals’ sphere of private autonomy.

This presentation explains how the privacy idea became the proverbial tree hiding the forest of issues and stakes arising from increasing computerization of our lives. We insist on the need for citizens to learn how to perceive this multitude hiding beyond this respectable concept of privacy.

Adult education should not only help to develop a culture of informatics that would make possible to the citizens to understand the phenomenon of computerization of their lives and of their society. It should not only help the citizens to learn how to harness the power of communication and information technologies. Adult education must also contribute to a renewal of democratic practices now needed because of the growing role of these technologies in the organization and regulation of relationships between social actors.

Such a program built upon a few basic notions:

Data processing materializes many relationships between citizens and other individuals, groups or organizations through the handling of objects called “information”.

Data processing is an effective form of legislation of interpersonal and social relationships.

Information items and their handling become objects, stakes and means in conflicts.

Citizens subjected to this type of regulation must have the occasion and the means of taking part in its development, just as they have been recognized the right to do so for the preparation and adoption of bills by legislatures.

The presentation discusses the roles that the citizens and the State, respectively, can play in this democratisation process as well as the conditions for success.

Entire Text (in French)

Beyond Privacy, the Control of the Citizens over their Computerized Lives

2006-11-02T19:48:00.000-05:00

Metaphor and reality

2006-10-31T16:29:00.000-05:00

Péladeau, Pierrot, "Métaphores et réalités" [Metaphor and reality]. Direction informatique, September 2002, p. 11.

Abstract

Computer talk is full of metaphors, which are essential in describing unfamiliar applications in familiar language. But this evocative power has a flip side: while a metaphor may clarify one dimension of reality, at the same time it may hide several other dimensions that are essential but incompatible with the logic of the image chosen. The danger is that we may discuss and evaluate the metaphor that helps us understand a computer application rather than discussing and evaluating the application itself. The controversy that accompanied the introduction of telephone caller identification applications (Caller ID) shows how far the perception of a device may be from its material reality. Social evaluation and discussion of a device and its effects must thus be based on a rigorous analysis that looks beyond linguistic effects such as metaphor.

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Entire text (in French only)

Masters of Form

2006-10-31T16:26:00.000-05:00

Péladeau, Pierrot, "Les maîtres du formulaire" [Masters of Form]. Direction informatique, August 2002, p. 13.

Abstract

Forms play a crucial role in the automatic processes they sustain, the collection of information. They occur at the determining moment when the client's reality is translated into the categories used by the organization. When put on line, a paper form that served effectively in the past can generate amazing numbers of errors because client attendants have been taken out of the loop. They used to play two key roles: to provide an adequate translation of the client's reality into the organization's categories and, conversely, to ensure in advance that organization's actions and decisions conform to the client's reality. These roles and their importance can be illustrated by what a school secretary does in the process of admitting and registering a student. Without attendants, an on-line form must be understood by every client and must provide all the information and instructions needed to use it properly. The organization must always be ready to give prompt help to clients in difficulty.

Entire texte (in French)

Respect for pre-computer rituals

2006-10-27T08:32:00.000-04:00

Péladeau, Pierrot, "Respect pour les rituels pré-informatiques" [Respect for pre-computer rituals]. Direction Informatique, October 2002, p. 19.

Abstract
In general, a new system of transactions involving individuals is inserted into a context of existing practices. Although technical invention may pave the way for social innovation (and vice versa), it can never create a completely new social space. Established practices often interact with proposed new practices. Ignorance of the practices and rituals in use thus produces a significant risk of failure in a new computerized system. The risks are exemplified by case studies in computerized handling of money and telephone communications. because they are solidly rooted in familiar terrain, pre-existing practices may escape notice. Designers and managers would benefit from implementing procedures to identify existing social practices in order to refine their projects' various interactions with these practices.

Entire Text (in French only)

The slippery path of computer-human relationships

2006-10-26T22:26:00.000-04:00

Péladeau, Pierrot, "Le périlleux chemin de la relation informatique avec l'individu" [The slippery path of computer-human relationships]. Direction Informatique, July 2002, p. 11.

Abstract
Lack of understanding by the developers of the varied reality of organizations' clients can lead to particularly awkward blunders in client relationship management applications, especially when the clients are not considered to be partners in the computerization process. Computer science itself is implicated, in that it naturally favours manipulation of abstractions. If the status of a client amounts to being an abstract informational entity, it's hardly surprising if the administrative design of computerization projects does not take into account the specific needs of the various types of people who make up the clientele. Developers ought to devote as much attention to the human dimensions of their projects as to the conceptual or technical dimensions. Two case studies illustrate the point: the misadventures of a smart health card project, and a financial institution's system designed to give its clients access to money deposited in their accounts.

Entire Text (in French only)

Visual Modelling of Health Information Systems for their Administrative, Legal, Social and Ethical Management

2006-10-23T22:04:00.000-04:00

Abstract

Operating within complex social environments, health information systems raise numerous administrative, social, legal and ethical issues that could become controversial. Gridlock can result from lack of common factual understanding of their technical and social dimensions. Some argue that data flow diagrams can help to dissipate misconceptions, delimit areas of concern and identify solutions. But flow charts and other existing visual models provide a poor image of exactly who and how social actors interact through a system. This article presents a new model which adapts elements from existing ones in order to convey concepts that have proved useful for the social assessement of information systems. Three experiments are presented here: the preparation of a patient consent form for a new health research data warehouse; the social assessment of an existing controversial system for prevention of illegal access to prescription drugs; and an impact analysis of an act regarding disclosure of confidential information on networked health records. As other visual models, this one forces the users to engage into rigourous analysis. However, its results are signifantly different and complementary. They can be powerfully revealing, yet easy to understand by non specialists. Further experimentation and writing of instruction material are now needed.

« La modélisation visuelle des systèmes d'information en santé pour leur gestion administrative, légale et éthique » in Grant AM, Fortin JP et Mathieu L (éds), L'informatique de la santé dans le soins intégrés : connaissances, applications, évaluation. Actes des 9e Journées Francophones d'Informatique Médicale, Sherbrooke : Société Québécoise d'informatique Biomédicale et de la Santé (SoQibs), 2003, pp. 297-308.

Entire text in PDF (in French):
http://www.ircm.qc.ca/bioethique/francais/telesante/documents/modelisation_visuelle.pdf

Democracy Struggling with Electronic Government

2006-10-23T00:37:00.000-04:00

Text produced is response to a question asked by Communautique on what I personally consider to be the main challenge posed by the development of electronic gouvernment.

Increasingly, relationships between citizens, public administration and State are mediated through the handling of objects called “information” (forms, files, statements, notices, letters, etc). This handling itself is more and more carried out through the use of automatic devices (computers, interactive web sites, automated telephone services). We are only at the very beginning of this computerization process.

This materialization and automation allow an effectiveness of the regulation of relationships that is unprecedented in History.

Just think of how much it became easy for the Chinese State to control and adapt, in real time, the access of a billion citizens to the contents of the Web according to its own requirements, the needs of various categories of citizens (political elite, intellectual and technical professions, ordinary citizens, etc) and the evolution of political conditions.

So great an effectiveness poses several challenges to democratic societies.

On the practical level, it exacerbates the problem of the adequacy of the legal standards to the particular individual situations. Indeed, the living conditions, histories and trajectories of citizens are becoming ever more diversified in societies that also are increasingly more pluralistic and complex. Contrary to the paper version of a law or regulation, which can remain more or less without effect or have its application adapted through civil servants’ discretion, an automatic device systematically and pitilessly applies the rules written in its program or hardware, completely unconcerned by the consequences. The total or partial delegation of rules’ application to machines thus requires from regulators (legislators, ministers or administrators) a considerably much finer detailed understanding of the realities of citizens’ lives. A quest difficult to achieve without the contribution of the greatest number of the very citizens who, in democracy, are recognized the right to have their word to say on the adoption of the rules and the development of the services addressed to them.

However, the citizens’ participation can be complicated by several factors, which in themselves pose challenges. Lets note two.

First, the intensive use of information permits regulation to become, less the expression of grand timeless universal principles (e.g.: “You shall not kill”) than the adoption of ad hoc sets of norms aiming at transitory objectives. Just think, for example, about the norms determining how driving licenses can now automatically be maintained or suspended according to a hazardous behaviors’ scoring system, which can change according to the evolution of statistics on road safety.

Or, to the automated calculation of public prescription drug insurance deductibles which, like the list of covered drugs, can also be modified at will. For instance, to adjust them by demographic categories (children, adults, 65 years and more, groups benefiting form social security) in function, in particular, of public health objectives determined by populations’ health indicators.

The capability to discuss this type of legal regulations thus rests more and more on the capacity to access, process, popularize and understand a wealth of statistics and other information justifying their adoption or their modification.

Secondly, these legal regulations are more and more written or produced by data processing specialists in a language incomprehensible by the average citizen. The 2002 debate on the Carte santé Québec (health smart card) project illustrates the pitfall of a legislative initiative in which the most fundamental normative components are to be found, not in the text of the proposed bill, but in the design of a set of interrelated data-processing devices (smart cards, card readers, software controlling access to health information or medical services, data bases, etc. – for details on this instance, see http://www.ledevoir.com/cgi-bin/imprimer?path=/2002/08/06/6599.html ). If in a democratic State based on the rule of law, no one is above of the law (and even less so when the law is implemented by automatic devices) and if the obligation to obey the law implies the right to know and have some say on its adoption, one cannot let these new norms be written in a language that only machines or specialists can read.

If nothing is done, we are likely to witness the development of a democratic deficit as well as small and large scales disruptive dysfunctions and lost of confidence between citizens, public administration and State.

To paraphrase a quote from Claude Julien, ex-editor in chief of Le Monde diplomatique, we can affirm that to these flaws of democracy and the information society, there is but one remedy: much more democracy, and much larger capability to handle information.

Concretely, that implies in particular:
- to learn collectively to “technicize” (or to “computerize”) some of the contents of our democratic debates and, conversely, to politicize some part of the technical design processes of the devices intended to support State interventions and services;
- to teach data-processing designers how to write the computerized norms in a comprehensible language and, reciprocally, to teach the citizens and their representatives to read and discuss them; and
- to ensure the citizens, not only an access to a maximum of information, but also their capacity to process, understand and communicate them.

These democratic tasks are as much those of the State, of the public and private organizations that of the citizens and components of the civil societies. Today, their achievement appears particularly urgent in the health and the social services sectors undergoing their computerization.

These challenges require as much an adaptation of our democratic institutions (including probably the documentation to be produced for a computerized bill or regulation project, the creation of an public expertise office serving both members of parliaments and citizens) than the development and the democratization of some basic informatics culture including elements of information sciences (what is writing, what is information), of social anthropology (what kind of relationships are established between social actors through the handling of informational objects) and of political sociology (how information and data processing are, simultaneously, objects, stakes and weapons involved in conflicts and how these conflicts can be resolved).

Only under such conditions democracy will survive, and even will develop further, with the computerization of the State.

I discuss in more details:

- on these challenges and responses in Par delà de la vie privée, la maîtrise des citoyens sur leurs vies informatisées : Contribution à la Journée d’études sur les nouvelles technologies et l’éducation des adultes, organisée par le comité de travail Nouvelles technologies et éducation des adultes de l’Institut canadien d’éducation des adultes (ICEA), Montréal, 8 avril 2003 ;

- on the role of informtics in the transformation of law and the personal relationships mediated through information : “L’informatique ordinatrice du droit et du procès d’information relatif aux personnes”, Revue Technologies de l’information et Société, (1989) 1 : 35.

The Networking of Health information Handbook for the management of ethical and social questions

2006-10-19T23:36:00.000-04:00

Demers DL., Fournier F, Lemire M, Péladeau P, Prémont M-C et Roy DJ, The Networking of Health information Handbook for the management of ethical and social questions, http://www.hc-sc.gc.ca/hcs-sss/pubs/kdec/qc_electron/index_e.html

The unofficial English translation of Le réseautage de l'information de santé : Manuel pour la gestion des questions éthiques et sociales, Montréal, Centre de bioéthique, IRCM, 2004, 268 p.

Health information networking is emerging in a growing number of experiments and technological roll-outs. However, several stakeholders feel poorly equipped to deal with the unprecedent nature of the changes considered and the complexity of the ethical and social issues raised. This book contributes to meet the need to ensure a reasoned development and use of information technologies in the health care system.

Prepared by a multidisciplinary team, this handbook aims at promoting the identification, assessment and management of the ethical and social issues of health information networking . It is addressed to all the stakholders and partners of networking projects who wish to understand and contribute to a greater social control of change: decision makers, managers, data processing specialists, health professionals, patients, other users of health information as well as citizens. The handbook aims, to not only raise awareness about the great diversity of issues involved, but also to provide knowledge and tools which will make it possible to avoid the most likely pitfalls.

The first part of the handbook, Introduction to networking ethics, offers an initiation to the nature of health information networking and to its social, legal and ethical dimensions. The second part, Key questions, first presents an overview of 29 sets of ethical and social questions gathered in four distinct, but indissociable categories: questions of governance, of social social nature, of networking operationnalisation and of change management. Eight major problematics are the subjects of as many chapters providing explanations, checklists and references.

Unofficial English translation at Health Canada website :
http://www.hc-sc.gc.ca/hcs-sss/pubs/kdec/qc_electron/index_e.html

Complete original French book in PDF format :
http://www.ircm.qc.ca/bioethique/francais/telesante/documents/manuel_reseautage.pdf

Variation in recruitement across site in a consent-based clinical data registry: lessons from the Canadian Stroke Network

2006-10-18T21:13:00.000-04:00

BMC Medical Ethics 2006, 7:6 doi:10.1186/1472-6939-7-6
http://www.biomedcentral.com/1472-6939/7/6

Donald J Willison1 , Moira K Kapral2 , Pierrot Peladeau3 , Janice A Richards4 , Jiming Fang4 and Frank L Silver5

1 Centre for Evaluation of Medicines, St. Joseph's Healthcare, Department of Clinical Epidemiology & Biostatistics, McMaster University Hamilton, Ontario, Canada
2 Department of Medicine, University of Toronto, Institute for Clinical Evaluative Sciences, Division of General Internal Medicine and Clinical Epidemiology, University Health Network, Toronto, Ontario, Canada
3 Centre for Bioethics, Clinical Research Institute of Montreal (IRCM), Centre francophone d'informatisation des organisations (CEFRIO), Montreal, Quebec, Canada
4 Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada
5 Division of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada

Abstract

Background
In earlier work, we found important selection biases when we tried to obtain consent for participation in a national stroke registry. Recognizing that not all registries will be exempt from requiring consent for participation, we examine here in greater depth the reasons for the poor accrual of patients from a systems perspective with a view to obtaining as representative sample as possible.

Methods
We determined the percent of eligible patients who were approached to participate and, among those approached, the percent who actually consented to participate. In addition we examined the reasons why people were not approached or did not consent and the variation across sites in the percent of patients approached and consented. We also considered site variation in restrictions on the accrual and data collection process imposed by either the local research ethics board or the hospital.

Results
Seventy percent of stroke patients were approached, with wide variations in approach rates across sites (from: 41% to 86%), and considerable inter-site variation in hospital policies governing patient accrual. Chief reasons for not approaching were discharge or death before being approached for consent. Seventeen percent of those approached refused to participate (range: 5% to 75%). Finally, 11% of those approached did not participate due to language or communication difficulties.

Conclusion
We found wide variation in approach and agree rates across sites that were accounted for, in part, by different approaches to accrual and idiosyncratic policies of the hospitals. This wide variation in approach and agree rates raises important challenges for research ethics boards and data protection authorities in determining when to waive consent requirements, when to press for increased quality control, when to permit local adaptation of the consent process, and when to permit alternatives to individual express consent. We offer several suggestions for those registries that require consent for participation.

TV documentary and radio interview on biometric identification

2006-10-12T16:22:00.000-04:00

The Christianne Charette radio-show of Radio Canada's Première Chaine asked me to preview a documentaire télé intitulé Le temps des bio-maîtres (Richard Copans/Les Films d’Ici) to be aired ont the RDI news network.

Not much to say about the documentary as such. It provides an overview of various biometric identification methods as explained and discussed by the developpers or promoters, without actual discussion about the quite large array of possible applications, nor of the numerous social and political implications. At times, it looks like an infomercial of sort.

As some point, the scenaro is almost dishonest. As the documentary presents applications worthing, at a minimum, tens of thousands of dollars up to tens of millions, one scene is the demonstration of how an hacker can fool a biometric device worthing... a few tens of dollars at your neighbourhood electronic store ! This discredit the director, not the Chaos Computer Club) people associated to the scheme.

The conclusion calling for citizens' « vigilance » leaves the viewers without a clue on how to exercise it since the documentary provides no indication on how to discriminate between available proposals, biometric or not.

But the 20 minutes radio interview was an opportunity to present some basic notions about biometrics (even if it is clearly too short for a real introduction)

Current activities

2006-10-01T23:30:00.000-04:00

Design of a citizen education program and writing of an essay on the role of personal information in the lives of individuals, organisations and societies as a mean to grasp the larger role of information in contemporary societies

Research on the theory, analysis and assessment of personal information processes, in particular the writing of an article proposing a typoloy of personal infomation according to the identification means and identifiability levels of the persons involved in the relationship supported by the information, as well as an another article on the pragmatic dimension of person information processes

Correspondance

2006-10-01T01:38:00.000-04:00

Coordinates

2006-10-01T01:30:00.002-04:00

Phone:
+1 (514) 716-0937

Email:
pierrot.peladeau[@t sign]pierrot-peladeau.net

Twitter:
http://twitter.com/PierrotPeladeau

Biographical notes

2006-10-01T00:55:00.000-04:00

Jurist and specialist in social assessment of personal information systems, Pierrot Péladeau is visiting researcher the Centre for Bioethics of the Clinical Research Institute of Montreal (IRCM) and associate researcher at CEFRIO, a public knowledge transfer centre in the field of informatics and organizations. He works on Informatics and Society issues since 1982. He studied or assessed numerous personal information or transaction systems in various fields such as health care and social services, scientific research, banking, public administration , communication and public utilities.

Notably, he is co-author of the Identité piratée (Hijacked Identity) report [SOQUIJ, 1986] that lead to the adoption of the Quebec Act respecting the protection of personal information in the private sector [L.R.Q. c. P-39.1] in 1993. Since 1992, he is a member of CSA’s Technical Committee on Privacy that developed the Model Code for the Protection of Personal Information [CAN/CSA Q-830-96] from which the Canadian federal Personal Information Protection and Electronic Documents Act [PIPEDA - L.C. 2000 c. 5] was drafted. He acted as special advisor to the Advisory Council on Health Infostructure of the Canadian Minister of Health (1998-1999). He recently co-authored Health Information Networking : Manual for the Management of Ethical and Social Issues [2004, Centre for Bioethics, IRCM, unofficial English version of the French Manual] and conducted a study on adequateness of e-government services in regard to individual social realities.

He is presently working on a training program and an essay on the role of personal information in the lives of individuals, organisations and societies; a research program on legal, social and ethical issues of the Quebec electronic health record ; as well as another research program on the theory, analysis and assessment of personal information processes.