AUTHOR
Manuel Sanromà and Joan M. Adserà

ABSTRACT

E-Health, this is healthcare practice supported by electronic processes and communication, has become a commonplace, particularly since the popularization of the Internet. In as much as healthcare is, in many countries, one of the most important public services, it can be considered a part of E-Governance. In any case, healthcare is an information intense activity and therefore Information Technologies should have much impact on its practice. Yet E-Health lags far behind, as far as its common use by citizens is concerned, compared to other activities like banking, shopping or even administration. Of course citizens are able to find much health information on the Internet and use this information as an instrument to socialize and share their concerns related to their health, but the vast majority of health organizations and/or health professionals in most countries are still reluctant, or simply failing, to offer online services to their patients.

We maintain that this is so because unlike in those other activities, where much of the information belonging to citizens is available in digital form, Medical Records are not yet so. Indeed Medical Records are at the base of Health Information Systems: they not only contain all the relevant information for the relationship between health professionals and patients as far as healthcare provision is concerned, but also of the healthcare activity from the economical, entrepreneurial and social point of view. Until recently, and even today in many organizations and countries around the world, this information is fragmented in a jumble of paper files and archives, even among the same organization. During the last few years we have witnessed a move towards computerization of this information in what is commonly known as Electronic Health Records opening the possibility of transforming Medical Records in powerful databases useful not only for the healthcare provision but also for research. This move towards computerization has opened new possibilities. On the side of health organizations it has allowed the implementation of quite a number of (not yet fully operational) projects of Shared Health Records at the regional, national and even international levels, where several organizations, with different information systems are able to share the basic information of patients which was fragmented and spread among the organizations. On the side of the patients it also allows a real control of their information by patients themselves, in what is commonly known as Personal Health Records; last year some well known companies of the Net, Google and Microsoft among them, launched websites where patients take full control of their health information.

We review all these developments and introduce an evolutionary model in five steps that allows us to integrate and understand all of them. Following this model we claim that a new a natural step of this evolution is ready to appear: what we call the Personal Health Space. This is a virtual 3-dimensional space where all the recent and new developments of ITs applied to healthcare provision will become integrated and that will substitute (or better include) the previous real space of healthcare centres where health professionals and patient used to (and still do) interact. One dimension of this space is shaped by the Personal Health Records, a patient-oriented (and not organization-oriented as Medical Records are) information system. Another dimension is the extension of the current model of face to face interaction: it is the world of multichannel interaction (which includes real face to face interaction plus all the possibilities of Telemedicine). We have finally as a third and last dimension all the possibilities opened by the Web 2.0, the social web: social interaction among patient and professionals has always been in place as far as healthcare is concerned, but when it is combined with the possibilities opened by Personal Health Records and Telemedicine it empowers patients and healthcare in general in ways not know before.

We discuss the direction towards which Information Technologies, combined with the cultural assimilation of these technologies, will be leading healthcare in the next years/decades. The Personal Health Space will change not only the way professionals and patients interact but their very same roles in this interaction along with that of health organizations. It will also alter the role o public and private spheres in healthcare provision. We also take into account the new issues raised by these developments which are of particular concern for such a sensitive and vital subject as healthcare is: digital divide, access, privacy and security are but some of the topics that will become even more important when patients’ health related information be concerned. In any case with the new tools available in the Personal Health Space, patients will have complete access and control of their own medical records as well as those of their close relatives, they will use knowledge coupling tools in conjunction with providers to support medical decision making, and they will be taught from childhood on how to interact with the system, just as they now learn how to interact with transport systems. As patients assume such decision making power they will reshape the whole and socially strategic healthcare marketplace.

AUTHOR
Jean Rohmer

ABSTRACT

Applying standards and methods is a must in modern society. However, in the domain of information processing systems or of computer-automated systems, we have observed that misuse or abuse of standards and methods can lead to very negative effects. We consider that contemporary misuse of standards may offend elementary scientific and technical ethics. In this note, we concentrate on these negative aspects, and we will not balance them with their positive ones. Among our concerns:

1) Standards and methods may prevent a project / product from succeeding If you ask designers of successful software products or services, they often explain that their secret is “never use standards” : they are too slow, change too often by keeping to fashion, the tools supposed to support them are faulty. They deliberately develop programs their own way, using tools tailored to their needs and fine-tuned year after year. Alternatively, when programmers are urged by to stick to standards, the risk of failure increases. Our own experience in managing large advanced software projects leads to the same conclusions. This is a problem for the conduct of scientific and technical projects: should a developer accept to comply with standards knowing it will impair the process, should management take the risk of departing from the common policy knowing that opinion –or justice- can blame this decision?

2) Standards and methods may be an obstacle to innovation and they decrease human skills Standards are designed to do standard things the standard way. If the standard you use is at low-level enough, it may be a good launching pad, but a high-level standard confines you in somebody else clothes and ideas. People lose their freedom, their responsibility, they stop to learn by try and errors. Moreover, management believe that, since there exist standards, all problems are solved by advance. In their eyes, standards depreciate the work of their employees, which become interchangeable.

3) Standards and methods may create the illusion of scientific progress Historically, standards were created after something had been invented and broadly adopted, to make its variants compatible. Recently, some authors found it faster to invent the standard first, make enough buzz around it, justifying more and more investments from governments and economy to reach the self -claimed Graal. We call them standards of fantasy. For instance, this is happening for years around the so-called “Semantic Web” W3C standards, which claim to make the Web an intelligent unified shared database at the scale of the Planet simply by the magic of standardizing the representation of elementary information. One of the bad consequences of such standards of fantasy, is that thousands of people generate research projects of fantasy, from the sole belief that in the future theses standards will give birth to a reality. Research becomes standardized, researchers become standardized, research programs become standardized … Then indeed standardized rhymes with sterilized. In such circumstances, ethics urges to resist to standards. And any scientific community should examine itself accordingly.
Standards of fantasy survive and flourish by creating vicious –not for them- circles: more and more projects are justified by the existence of these standards, which in their turn boast of their adoption by more and more projects.

At this point, it is tempting to make a parallel with the current financial crisis. Abuse of methods, abuse of standards, may lead to a spiral of catastrophes. If we play this game, we can develop the analogy:

— giving a method to people is like lending them experience, knowledge, intelligence they are missing, and that they will not be able to refund, except at the price of adopting another method supposed to correct the bad consequences of the first one, as subscribing a new loan. In another words, a kind of Ponzi pyramide.

— the method of splitting a given activity or project into many sub-activities or subprojects delegated to third parties is like securitization in finance . This is frequent in engineering with cascades of subcontracting, and in cooperative research projects with too many partners. Each partner is chosen because it is supposed to excel in applying such or such submethod. Finally, risks are diluted and nobody knows where they hide.

— fiscal paradises, money laundering also exist in the world of standards and methods: their name is Powerpoint presentations: by using formatted ways of writing and communicating, they transform poor content, empty ideas into the appearance of professionalism and trusted knowledge.

— junk bonds are simply the standards of fantasy mentioned earlier

— finally, the cement of this analogy is the existence in both sides of a pensée unique : the belief in standards and methods versus the belief in extreme liberalism and deregulation (a kind of paradox )

To conclude on a positive note, we propose that a way to escape the crisis created by abuse of standards and methods, it to reempower all actors of information systems. We must stop imposing programmers standards of programming which cripple them, and in fact have the only aim of preventing them from programming, by fear of their potential mistakes. And if we fear we fail. We must encourage liberal rather than carceral programming. We must also propose end-users themselves tools to let them become programmers of their own knowledge, rather than simple consumers of online information. In this direction, we advocate in other publications -under the expression of litteratus calculus- for using natural language and dialogue as the ultimate standards, standards built by human history, and which span from millennium to millennium.

AUTHOR
Anne Rogerson

ABSTRACT

ICT has revolutionised learning opportunities and the tools available to teachers and schools to deliver knowledge, and more especially to develop a love of learning, amongst the young people with whom they work. There can be no disputing the increased breadth and depth of information available through the internet and sources such as Wikipedia. The web has revolutionised the way pupils can access information. There are possibilities of drilling down to find statistical data, maps and plans which would have been generally inaccessible at local level, much less available within the school or home, for the average adolescent prior to the web. Such sources make personalised learning a reality and provide the path to realisation of individual potential. An initial examination of the current climate and the changes which have occurred in schools’ use of ICT over the past two decades may therefore lead to the conclusion that they fall into the category of “forward changes”. Other forward changes could include the opportunities to communicate with young people of similar age in other countries and from other cultures. Such interaction can create the means of breaking down barriers which so often are the foundation of prejudice based on ignorance.

Looking at the last example of a possible forward change, such interaction would fall under the broad banner of social networking. Does this mean that social networking, per se, represents a forward change in the use of ICT, particularly as it effects young people?(For the purpose of this paper young people are defined as pupils aged 11-16 years who, in England, would be at the secondary stage of statutory education) There are a host of examples to be culled from news reports of the potential, and in some cases the actual, abuse of young people by contacts made on the internet. Does this then mean that ICT has produced a “backwards change” in terms of social impact, providing a broader platform and a vehicle for those who would do children harm? Are young people significantly more at risk, through social networking, of being “groomed” by potential paedophiles?

Sexual abuse is but one aspect of abuse and is usually, not always accurately, perceived as being perpetrated by adults on minors. It can of course sometimes be a dominant minor involved in perpetrating such abuse. However, arguably, a more common form of abuse is that of bullying. This can take the form of one on one , or one on many, in the on-line world, just as in the real world. Is the risk of being bullied greater on-line, via social networking sites, than it is off-line? Is on- line bullying different from off-line bullying? Are the effects different? What are the remedies and, more crucially, what are the attitudes of young people, born in the digital age, themselves to these issues?

There are other aspects of social networking which merit examination in terms of use by minors. Does the use of social networking enhance or stilt the development of more conventional means of social intercourse? Is there a danger that increased use of the web will lead to a reduction in face to face meetings, increasing isolation and a risk of losing what are currently regarded as commonly accepted inter- personal skills? Such skills may include the ability to respect and acknowledge personal space, read visual cues such as facial expressions alongside auditory stimuli such as tone, volume and pace of voice. Furthermore, is this group of young people more vulnerable than adult users and so should there be controls/strictures in place aimed at their protection? Do the adults in society have a duty of care to these young users and if so, who should exercise that duty of care and what form should the expression of that care take? Is it an issue of control through statute and policing, or will that simply serve to stifle the creative, beneficial uses of social networking sites by the young? Should the care come from the providers of social networking sites( the conduits) such as Facebook, My Space and Bebo? How can they assist in the protection of young people, or indeed is it their role to do so? What is the role of the ultimate child carers, namely the parents? Last but not least of these adults with a duty of care, what is the role of schools and education professionals in this safeguarding debate, which must surely aim at achieving a balance between protecting the young from abuse, whilst enabling them to develop through harnessing the benefits of this very powerful medium of ICT. The obverse of this “duty of care “coin is should adults be the instigators of safeguarding or should they simply be the channel empowering young people themselves to develop their own safeguarding techniques?

It is necessary to know the views and experiences of young people on these issues before being able to answer the broader question of whether ICT changes, which have enabled the growth of on line social networking, have proved a backwards or forwards step change in terms of social impact, or indeed whether social networking constitutes a sideways change. For this reason, the final paper will present the results of a detailed survey examining the issues, including the use of social networking sites, preferred providers, origin of contacts and purpose of use by young people. The sample population will be drawn from pupils at two secondary schools in different locations within England. Based on the outcome of that survey, focus groups will be established to discuss questions raised in this abstract and to enable conclusions to be drawn, within the constraints necessarily imposed by the sampling of the young people, on the issue of the nature of the changes in ICT.

AUTHOR
Wade L. Robison

ABSTRACT

Abstract: The most important concern with the integrity of voting machines which use software is the integrity of the software itself — the assurance that it is correctly recording votes and, at the end, tallying them up correctly. We in the United States have had a number of situations in which problems traceable to the software in voting machines has tainted the voting process.

Yet concentration on this problem should not obscure the importance of another that can equally taint the voting process. The design of the Palm Beach paper ballot is now famous, or infamous, for misdirecting voters so that even the most intelligent, well-trained and most highly motivated would make mistakes — like voting for Pat Buchanan instead of Al Gore, a mistake apparently made by upwards to 23,000 voters, more than enough to have changed the outcome of the election — and our subsequent history. That ballot illustrates well what I call an error-provocative design.

Error-provocative designs are those which provoke mistakes on the part of the most intelligent, well-trained, and most highly motivated users. The software in the autopilot in the Columbia airliner that flew into a mountain side in 1996 was error-provocative. The pilot’s job was to key in the initial letter of the beacon for the airport where the plane was to land. The autopilot would then pick the top of the listed five options that would appear and land the plane. The default was that the closest was at the top of the list — unless the pilot keyed in “R,” in which case the software selected Bogota. The plane was to land at Cali. Its beacon began with the letter “R” as did the beacon for Bogota. When the pilot keyed in “R,” the plane turned towards Bogota. The pilots did not figure out that there was a problem until it was too late. 159 people were killed when the plane flew straight into a mountain side near Cali.

Not even the most intelligent, well-trained, and high motivated of pilots is likely always to avoid the error that led to that disaster. Putting two defaults in the autopilot software was a recipe for disaster. But it was a self-contained recipe. Everything occurred on a screen. We often have the same kind of error-provocative design when an image is produced on a screen set within a frame. The frame has buttons to push, for instance, that trigger the next item on the menu. ATMs often work this way, with the software producing choices — “Checking” or “Savings” — for the operator to choose between by pushing a button to the right of the arrows following “Checking” and “Savings.” All too often, the arrows on the screen do not match up directly with the buttons — just as in the Palm Beach ballot, and the operator must guess whether it is the button above or below the arrow that is to be pushed. My bank ATM works this way with a perverse twist: I am always to push the button above the arrow except once — when I am to push the button below the arrow. If I do not then push the button below the arrow, I am shunted out of the system, informed that no transaction has occurred, and, then, curiously enough, thanked for making a transaction. I get a receipt with nothing on it except the date and time and name of the bank.

The operator is given no warning that the next item in the menu requires that the lower button be pushed, and though you can learn how to use the machine, it is easy to forget if you do not use it often — and quite exasperating because if you do not pay very careful attention, you will not remember where in the menu things went wrong.

This example illustrates a general truth for software engineers and those using software in such framed settings — on voting machines, for instance, as well as ATMs or airport kiosks for checking in, to give just two more examples. Software engineers are morally obligated, at a minimum, to avoid error-provocative designs. Such a design would be the weapon of choice for an evil genius of an engineer, determined to create engineering artifacts that would cause great harm. Just imagine such an error-provocative design in the software that runs a nuclear plant, or a subway system, the air traffic control system, or electronic voting machines. Engineers are morally obligated to avoid such designs just because they can cause great harm.

Yet as my bank’s ATM illustrates, software engineers might not think too much about how their software is going to be displayed, particularly when the screen is framed. A design that would not cause undue harm were the menu self-contained on a screen could cause great harm once framed. It is not sufficient for a software engineer to say, “That’s not my problem. I just do software.” The problem is with an inconsistency in the ATM software: the code has an anomalous exception to the standard code that requires pushing the upper button to proceed. But, just as important, software engineers are responsible for ensuring that their software works when in place. That means ensuring it works with other software that may already be there, but also means ensuring that it works if the screen is framed.

AUTHOR
Wade L. Robison

ABSTRACT

Abstract: Alexander Hamilton wrote in the Federalist Papers against adding a Bill of Rights to our Constitution. Besides sending the misleading signal that we need protection from a government to which we have granted only limited powers, some features of a Bill of Rights would be useless, he argued. In particular, regarding freedom of the press, he said in Paper No. 84 that “its security, whatever fine declarations may be inserted in any constitution respecting it, must altogether depend on public opinion, and on the general spirit of the people and of the government.”

We can find no better example of Hamilton’s general point than the way Iranians used twitter to communicate and organize protests regarding the presidential election there and few better examples of how important new modes of communication have become in ensuring that citizens are heard. But there are several different issues to disentangle here.

First, with the technological revolution of the last several decades we have moved far beyond concern about what we now can see is of very limited value. It is not freedom of the press that should be our concern, but freedom of communication, in all its forms, the press being the most prominent when our constitution was created and far less prominent, in its printed format at least, in this era. Technology has produced new ways of communicating that would beggar Hamilton’s imagination. The printed press is such a very small part of our technologically enhanced forms of communication that the phrase “freedom of the press” seems almost quaint if taken to refer to how citizens are now to obtain information relevant to their role as citizens and to communicate with one another about matters of common concern.

Second, as the old saw has it, “An informed citizenry is the bulwark of a democracy.” These new forms of communication give us the potential for far more informed citizens and, as the Iranian protests illustrate, the potential as well for new ways to mobilize and organize citizens — and get a sense of public opinion. The Iranian Constitution provides for freedom of the press except “when it is detrimental to the fundamental principles of Islam or the rights of the public.” The security of this restriction, as Hamilton might put it, clearly depends upon Iranian public opinion. But a large number of Iranians disagreed with the government’s judgment about what is detrimental and voted by twittering.

Third, these new modes of communication are somewhat dependent on a government’s not interfering with them. The Iranian government tried to control twitter communications when it realized that those protesting were using it to coordinate their protests. As long as the “general spirit…of the government” runs counter to the aims of those using these new modes of communication to organize or critique the government, communication by these modes among citizens of a country is at risk.

So, fourth, we have a challenge. Can we develop a mode of communication completely independent of the potential for governmental interference? As Petroski and others have argued at length, engineering proceeds through dissatisfaction with our available artifacts. What the Iranian experience shows is that modes of communication such as twitter can be very effective in allowing citizens to critique and protest their government and its policies, but if a government can control such modes of communication, they are no better than a government-run press. The design problem needs to be expanded, of course. For one thing, among many, there is no vetting of twitter communications. So rumors are as likely to result as useful information, and acting on rumors will not help those protesting a government or its policies.

AUTHOR
Wade L. Robison

ABSTRACT

In Iceland, DNA is being gathered from all citizens with the idea of creating a database of information. There are not that many Icelandic citizens, and they are geographically isolated from neighbors. Those gathering the data do not need to concern themselves as much with strangers wandering in from outside to contaminate the sample, and citizens not in Iceland can be readily identified because there are few ways off the island that do not require passing through passport control. ? One concern is that gathering this information in a database will put at risk individual’s privacy, but that general claim encapsulates different kinds of harm to our privacy. These different harms have developed in tort law since the first privacy law was passed in New York in the early 1900’s. We might think of this as open source development of the concept of privacy by practitioners with great skill in discerning, and creating, distinctions that make a difference to the rights of individuals and corporations. The concept has been honed by a great many good minds with a real interest in getting clear on what the concept means and what it entails. A decision in a case depends upon it. So the distinctions between these different kinds of harms to our privacy are clear: they harm us in different ways, the ways in which we prevent the harms are different, and the remedies when our privacy is invaded in any of these different ways are different.

So when concern is expressed about databases like that in Iceland invading our privacy, we need to sort out which privacy harms such databases ensure or make likely. Otherwise, we may find ourselves in the position of having created software for a database that protects us against one kind of privacy harm, but not against some other. We shall discover that a database like that in Iceland will ensure one kind of privacy harm and that there is no way to protect against it, that the remedies for two that we must protect in the same way are very different, and thus, among other things, there is no single response appropriate to a concern about such databases invading our privacy.