By Ismael Peña-López (@ictlogist), 31 December 2013
Main categories: e-Government, e-Administration, Politics, ICT4D, Information Society, Knowledge Management, Open Access, Participation, Engagement, Use, Activism
Other tags: open_innovation, open_social_innovation, social_innovation
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Innovation, open innovation, social innovation… is there such a thing as open social innovation? Is there innovation in the field of civic action that is open, that shares protocols and processes and, above all, outcomes? Or, better indeed, is there a collectively created innovative social action whose outcomes are aimed at collective appropriation?
Innovation
It seems unavoidable, when speaking about innovation, to quote Joseph A. Schumpeter in Capitalism, Socialism and Democracy:
The fundamental impulse that sets and keeps the capitalist engine in motion comes from the new consumers’ goods, the new methods of production or transportation, the new markets, the new forms of industrial organization that capitalist enterprise creates.
In the aforementioned work and in Business Cycles: a Theoretical, Historical and Statistical Analysis of the Capitalist Process he stated that innovation necessarily had to end up with existing processes, and that entire enterprises and industries would be destroyed with the coming of new ways of doing things, as the side effect of innovation. This creative destruction would come from, at least, the following fronts:
- A new good or service in the market (e.g. tablets vs. PCs).
- A new method of production or distribution of already existing goods and services (e.g. music streaming vs. CDs).
- Opening new markets (e.g. smartphones for elderly non-users).
- Accessing new sources of raw materials (e.g. fracking).
- The creation of a new monopoly or the destruction of an existing one (e.g. Google search engine)
Social innovation
Social innovation is usually described as innovative practices that strengthen civil society. Being this a very broad definition, I personally like how Ethan Zuckerman described social innovation in the Network Society. According to his innovation model:
- Innovation comes from constraint.
- Innovation fights culture.
- Innovation does embrace market mechanisms.
- Innovation builds upon existing platforms.
- Innovation comes from close observation of the target environment.
- Innovation focuses more on what you have more that what you lack.
- Innovation is based on a “infrastructure begets infrastructure” basis.
His model comes from a technological approach — and thus maybe has a certain bias towards the culture of engineering — but it does explain very well how many social innovations in the field of civil rights have been working lately (e.g. the Spanish Indignados movement).
Open innovation
The best way to define open innovation is after Henry W. Chesbrough’s Open Innovation: The New Imperative for Creating And Profiting from Technology, which can be summarized as follows:
Closed Innovation Principles |
Open Innovation Principles |
The smart people in the field work for us. |
Not all the smart people in the field work for us. We need to work with smart people inside and outside the company. |
To profit from R&D, we must discover it, develop it, and ship it ourselves. |
External R&D can create significant value: internal R&D is needed to claim some portion of that value. |
If we discover it ourselves, we will get it to the market first. |
We don’t have to originate the research to profit from it. |
If we create the most and the best ideas in the industry, we will win. |
If we make the best use of internal and external ideas, we will win. |
We should control our IP, so that our competitors don’t profit from our ideas. |
We should profit from others’ use of our IP, and we should buy others’ IP whenever it advances our business model. |
Open Social Innovation
The question is, can we try and find a way to mix all the former approaches? Especially, can we speak about how to have social innovation being open?
In my opinion, there is an important difference between social innovation and innovation that happens in the for-profit environment:
- The first one, and more obvious, is that while the former one has to somehow capture and capitalize the benefits of innovation, the second one is sort of straightforward: if the innovation exists, then society can “automatically” appropriate it.
- The second one is the real cornerstone: while (usually) the important thing in (for-profit) open innovation is the outcome, in social innovation it (usually) is more important the process followed to achieve a goal rather than achieving the goal itself.
Thus, in this train of thought, open social innovation is the creative destruction that aims at making up new processes that can be appropriated by the whole of civil society. I think there are increasingly interesting examples of open social innovation in the field of social movements, of e-participation and e-democracy, the digital commons, P2P practices, hacktivism and artivism, etc.
I think that open social innovation has three main characteristics that can be fostered by three main actions of policies.
Characteristics
- Decentralization. Open social innovation allows proactive participation, and not only directed participation. For this to happen, content has to be separated from the container, or tasks be detached from institutions.
- Individualization. Open social innovation allows individual participation, especially at the origin of innovation. This does not mean that collective innovation is bad or avoided, but just that individuals have much flexibility o start on their own. This is only possible with the atomization of processes and responsibilities, thus enabling maximum granularity of tasks and total separation of roles.
- Casual participation. Open social innovation allows participation to be casual, just in time, and not necessarily for a log period of time or on a regular basis. This is only possible by lowering the costs of participation, including lowering transaction costs thus enabling that multiple actors can join innovative approaches.
Policies
How do we foster decentralization-individualization-casual participation? how do we separate content from the container? how do we atomize processes, enable granularity? how do we lower costs of participation and transaction costs?
- Provide context. The first thing an actor can do to foster open social innovation is to provide a major understanding of what is the environment like, what is the framework, what are the global trends that affect collective action.
- Facilitate a platform. It is not about creating a platform, it is not about gathering people around our initiative. It deals about identifying an agora, a network and making it work. Sometimes it will be an actual platform, sometimes it will be about finding out an existing one and contributing to its development, sometimes about attracting people to these places, sometimes about making people meet.
- Fuel interaction. Build it and they will come? Not at all. Interaction has to be boosted, but without interferences so not to dampen distributed, decentralized leadership. Content usually is king in this field. But not any content, but filtered, grounded, contextualized and hyperlinked content.
Some last thoughts
Let us now think about the role of some nonprofits, political parties, labour unions, governments, associations, mass media, universities and schools.
It has quite often been said that most of these institutions — if not all — will perish with the change of paradigm towards a Networked or Knowledge Society. I actually believe that all of them will radically change and will be very different from what we now understand by these institutions. Disappear?
While I think there is less and less room for universities and schools to “educate”, I believe that the horizon that is now opening for them to “enable and foster learning” is tremendously huge. Thus, I see educational institutions having a very important role as context builders, platform facilitators and interaction fuellers. It’s called learning to learn.
What for democratic institutions? I cannot see a bright future in leading and providing brilliant solutions for everyone’s problems. But I would definitely like to see them having a very important role as context builders, platform facilitators and interaction fuellers. It’s called open government.
Same for nonprofits of all purposes. Rather than solving problems, I totally see them as empowering people and helping them to go beyond empowerment and achieve total governance of their persons and institutions, through socioeconomic development and objective choice, value change and emancipative values, and democratization and freedom rights.
This is, actually, the turn that I would be expecting in the following years in most public and not-for-profit institutions. They will probably become mostly useless with their current organizational design, but they can definitely play a major role in society if they shift towards open social innovation.
By Ismael Peña-López (@ictlogist), 02 October 2013
Main categories: Information Society, Open Access, Participation, Engagement, Use, Activism
Other tags: online_journalism
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Journalism has traditionally faced the same constraints of most institutions of the industrial society. On the one hand, the scarcity of resources: remote or hidden sources of information, a limited radio wave spectrum, lack of paper and the associated costs to buy it, etc. On the other hand, the transaction costs of putting the whole thing together: expensive (tele)communication infrastructures, reaching an audience, reaching advertisers, coordinating staff, etc.
These are arguably the most powerful reasons why media are mass media, and why we quite often cannot think about journalism without translating it into mass media – even if the concepts are as different as the seventh art and the entertainment industry. Thus, mass media address a general audience with general information (we are simplifying here, of course). In other words, mass media does scale up: in a bricks-and-mortar-and-paper world, it is more efficient and effective to address a massive audience than targeting each and every individual according to their tastes.
On the contrary, other scenarios are just not sustainable. Let’s take, for instance, the example of critical analysis of local political news. Such exercise requires, on the one hand, a deep knowledge of journalism and, on the other hand, a deep knowledge of political science, sociology, economics, etc. to which we have to add the narrow context of a municipality. But as the scenario is a municipality, it is unlikely that such a narrow audience will be able to sustain such an investment in quality knowledge: specialized (and expensive) journalists vs. a short number of advertisers and a reduced number of newspaper readers/buyers.
The trade-off is, of course, a lack of breadth and depth of news and information in general. That is, it is just normal that, if media aim at having a massive audience, they simply address the very average of the distribution of population — just like most political parties do too — both in terms of topics addressed (breadth) and the intensiveness with which they are addressed (depth).
As a result, it is not surprising to witness the huge concentration of media producing information — but not data journalism or critical analysis — about quite general topics — but with poor specialization or opening up the lens to provide comparisons between topics or a broader context.
Depth
Width
|
Data
|
Information
|
Knowledge
|
Micro / specialized / local |
|
|
|
Meso / General |
|
|
|
Macro / Multidisciplinary |
|
|
|
Table 1: saturated niches of journalism
But the digitization of information and communications may open up what once was closed in the name of efficiency and effectiveness.
Now, the costs of producing information are lowered dramatically. Actually, what is now much lower is not the costs of producing information but the costs of publishing or broadcasting it, which is quite different. The most immediate thing that comes to mind is the reduction of the cost of paper. But there is much much more than that: the Internet knows not about radiowave (physical) constraints and, thus, knows not about a short supply of wave spectrum that pushes prices up; the Internet neither knows about the costs of accessing quality multimedia content from whatever place in the world (one’s own city suburbs included, by the way); the Internet knows not of most costs related to delivery; etc.
If costs are cut down, so can revenues.
And if revenues can be reduced, so can audiences.
And then specialization can happen.
What new spaces are disclosed by online journalism?
Depth
Width
|
Data
|
Information
|
Knowledge
|
Micro / specialized / local |
Characterization Pattern recognition |
|
Policy |
Meso / General |
|
|
|
Macro / Multidisciplinary |
Correlation Causality |
|
Macro-level comparisons Macro-level trends Complexity Paradigm shifts |
Table 2: new niches of online journalism vs. saturated niches.
Firstly, we can now dig into the micro-level, by being specialized in a topic or discipline or, if we are speaking in geographical terms, we can go back to the local level and provide quality data at this level.
Secondly, we can broaden the scope of data out to the macro-level, providing a multidisciplinary approach that can bring into the equation analysis of correlation and causality between different variables and/or levels. At the geographical level this means shifting to a world wide vision and thus providing context.
Symmetrically, we can gain depth in the quality of information and turn it into knowledge that can be directly applied as policy advice and the very micro or local levels.
These are just scattered reflections upon which I have been rambling the past years. But it seems to me — and it is just a personal impression — that some of these things are beginning to take real form. We will see, in the near future, whether they become mainstream or just end up to the place where unsuccessful experiments of trial-and-error go.
By Ismael Peña-López (@ictlogist), 25 August 2013
Main categories: e-Government, e-Administration, Politics, Information Society, Participation, Engagement, Use, Activism
Other tags: e-democracy, social_movements
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The following paragraphs do not intend to present an idea particularly new, although I think it is pertinent to say that they seek to revisit an old idea under a new context.
On the other hand, this is more an intellectual exercise — or even a speculation — rather than an academic proposition. However, it is fair to acknowledge that this exercise does not appear out of the blue. On the contrary, it is firmly based on two recently published works and the respective bibliographies that support them:
- Casual Politics: From slacktivism to emergent movements and pattern recognition (bibliography).
- Spanish Indignados and the evolution of 15M: towards networked para-institutions (bibliography).
Finally, although this discussion has been cooking in the oven for the last few months, I can not leave unsaid that Daniel Innerarity’s latest op-ed — ¿El final de los partidos? [The end of parties?] — has been the final trigger. The article — a highly recommended reading — goes on to state that although the world has changed, the institutions of democracy (governments, parliaments, political parties, unions, nonprofits, etc.) are still the best way we have to organize our lives in society. And that these institutions being reformed, but in essence those are the ones we have and the ones we should be keeping.
Institutions and democracy
Les us simplify as much as possible — with the consequent risk to fall into inaccuracies, generalizations and biases — what is a liberal democracy.
Since policy is no longer the management of the polis, citizenship has been alienated from the exercise of directly and personally ruling public affairs. This is no answer to no plan hatched in the dark to uptake power, but mainly responds to reasons of efficiency: the polis has become a county, a region, a state, a global world that requires full-time leaders, professionals that can manage the enormous complexity of politics and that, of course, serve all citizens and respond to them and their needs. No one can afford devoting themselves to managing public affairs and, at the same time, managing personal matters and earning their livelihoods. At least not without the slaves who had our Greek ancestors (some of our contemporary representatives actually have someone working for them, or just neglect public affairs, but this is another matter).
We have created, thus, institutions that represent us politically and work for everyone. At the lowest level of those institutions (e.g. political parties or labour unions) many citizens participate (joining, sympathizing, collaborating) to gather information on the needs and demands of their peer citizens, as well as deliberating on the various possible solutions.
At another level, a few representatives (governments, parliaments) are responsible for making decisions, after having negotiated the wills of the various groups represented. At the end of the cycle, this level ensures accountability of the decisions made before the lower level.
The general population, given the difficulty of being informed and engaged, remains outside the whole process and only follows it remotely through the press, political propaganda and punctual moments of participation through the ballot box.
Crisis of institutions
There are at least four reasons why current political institutions have seen their legitimacy diminishing in the process of representative (or institutional) democracy:
- Because the professionalization of their boards has become not a means but an end in itself. Staying on the job happens to be the goal of many in office, getting out of line of what should be their genuine purpose: to serve the citizens they represent. This deviation or sheer abandonment of the original mission of the institutions, of course, has happened at the expense of the legitimacy and the gradual withdrawal of citizenship.
- This professionalization has crowded out from the foundations of the institutions those citizens who saw participation as a vocation of service and not as a professional vocation. This expulsion may have been active or reactive, but the results have been clear: thinning of the bases and withdrawal (again) of the bulk of the citizenry.
- The increasing complexity of politics, together with the professionalization and the brain drain of the institutions has resulted in the worst of situations: trivialization and playing down of the complex, simplifying the political message and its consequent radicalization of ideas. The political debate becomes meager, addressed to media, puerile, rather than strengthening deliberation and seeking learning in the democratic process. In the absence of political pedagogy, behold disaffection.
- Last but not least, many of the previously mentioned issues may not have a solution, but they could in deed have a strong contribution thanks to the new Information and Communication Technologies (information and communication: how often we forget the meaning of the acronym ICT). There are many things that ICT could help on: encourage participation and engagement of talent, transparency and accountability, dialogue and debate. If they are not a magic solution, their negation itself is a clear statement of principles: although the use of ICTs may have great potential in all areas of politics, we have no intention of putting them into practice and realize this potential. More disaffection, especially from the ones who could and would participate.
Consequences?
On the one hand, the thinning of the bases of the institutions, especially those closest to the citizenry (parties, unions). On the other hand, the shift of information and accountability “upwards”: the same ones that negotiate and make decisions are the same ones that are informed about what is “necessary” or “convenient” being done, and are also the same ones that are accountable amongst themselves.
The result is a growing disconnect with the society due to the shrinking of the social bases and the lack of in-depth, “vertical”, technical and political paths of the implemented policies. Deliberation is not only absent but even avoided. Without information, citizens can not deliberate. Indeed, without being “professionalized”, the citizenry becomes a hindrance to decision making. Everything for the people.
Social movements
Kicked out by institutions, empowered by digital technologies and spurred by the crises (increasingly less cyclical and increasingly more structural, given the speed of change in the new Information Society) citizens organize themselves. Oblivious to the institutions. Even despite institutions.
They organize, and it is worth emphasizing it, the do it in a horizontal way, away from the verticalities of the party hierarchies. And they do it horizontally for two main reasons:
- Because this is the architecture that the new technology — the great enabler of new organizations — promotes above all. One person, one node. While there actually are leaders, they are leaders to the extent that they contribute to the cause, not to the extent of them thriving within and up the organization. And they are leaders while they are facilitators, not fosterers: facilitating the work of the entire network, not just staging their own personal and individual projects.
- Because the new binders are the projects, not big enterprises. While it is true that, by aggregation, projects can generate programs and programs can generate these strategies, in the new movements what is important is trees, not the forest, fishes, not the bank. The initial goal is to save my home, not to change the housing law, while larger institutions begin to change the law and, if given the circumstances, save a handful of homes. And that’s what it means “bottom-up”: not only where the action starts, but the fact that the overall process is reversed.
The problem, as can well be seen in the example above, is that the translation from horizontal to vertical is very complicated. And the shift from project to strategy, from local to global, from what is personal to what is public does require a certain verticality.
It is at this point where I personally agree with those defending tooth and nail the existence of institutions. And it is certainly a crucial point that separates me/us from those who opt for the elimination of the institutions or their reduction to a minimum — and this includes assembly-based movements and anarchists, but also, and it should not be forgotten, extreme liberalism (extremes always meet).
But that we need institutions does not mean that (a) they necessarily have to be the ones we already have, or that (b) even if we keep the ones we have, their design should be the same one they now have. Or, put another way, there is much room for debate between maintaining the status quo — the democratic institutions should be the same ones we already have — and demolishing any semblance of institutionality — direct and/or assembly-based democracy.
In a world of shadows of grey, away from black or white, there surely is room for a possible hybridization of organized citizens and traditional institutions. This reflection began by saying that the idea was not new, but the context was. It is possible that the great institutions of the past must now split into different institutions, some older ones (parties, unions) who will come to live with some newer ones (or not so new, but refurbished in their inner organization: platforms, movements). I believe that many of the functions taking place inside the classical institutions may end up taking place outside of them and within new institutions. Efficiently and effectively conveyed by technology, without barriers of time and space, it seems possible and even desirable to me to return the information back to the base, to the new institutions of the civil society that will extend the length and breadth of the citizenry and citizenship. Moreover, if there is a place where deliberation — an informed deliberation — can happen, where better than out under the daylight, among peers, with total openness and transparency. Ditto for accountability.
For the rest, to link the global with the local, the collective and the personal, to “verticalize” the demands into decision-making, traditional institutions surely will continue to have an important role… although with severe transformations: like learning how to listen, how to network. They will arguably be much more flexible, probably smaller; relegating power, shifting representation and many other tasks towards the new social movements and civil society organizations. They will have to work together and, therefore, establish ways to collaborate, to mutually enrich themselves, to share the work.
In short, the grassroots levels of the parties should probably be “outsourced” and keep parties not as think tanks or policy-making industries (which largely have by now ceased to be) but facilitators and implementers of proposals. About leadership, the civil society will sooner or later take over.
By Ismael Peña-López (@ictlogist), 27 June 2013
Main categories: Cyberlaw, governance, rights, e-Government, e-Administration, Politics, Information Society, Meetings, News, Participation, Engagement, Use, Activism
Other tags: idp, idp2013
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The proceedings of the 9th International Conference on Internet, Law & Politics (IDP 2013): Challenges and Opportunities of Online Entertainment are already available for download.
Content, besides some minor editing, has followed the originals, so the reader will find articles both in Spanish or English.
To cite this work we suggest using any of the following references:
Balcells, J., Cerrillo i Martínez, A., Peguera, M., Peña-López, I., Pifarré de Moner, M.J., & Vilasau Solana, M. (coords.) (2012). Big Data. Retos y Oportunidades. Actas del IX Congreso Internacional, Internet, Derecho y Política. Universitat Oberta de Catalunya, Barcelona 25-26 Junio, 2013. Barcelona: UOC-Huygens Editorial.
Balcells, J., Cerrillo i Martínez, A., Peguera, M., Peña-López, I., Pifarré de Moner, M.J., & Vilasau Solana, M. (coords.) (2012). Big Data. Challenges and Opportunities. Proceedings of the 9th International Conference on Internet, Law & Politics. Universitat Oberta de Catalunya, Barcelona 25-26 June, 2012. Barcelona: UOC-Huygens Editorial.
Balcells, J., Cerrillo i Martínez, A., Peguera, M., Peña-López, I., Pifarré de Moner, M.J., & Vilasau Solana, M. (coords.) (2012). Big Data. Retos y Oportunidades. Actas del IX Congreso Internacional, Internet, Derecho y Política. Universitat Oberta de Catalunya, Barcelona 25-26 Junio, 2013. Barcelona: UOC-Huygens Editorial.
9th Internet, Law and Politics Conference (2013)
By Ismael Peña-López (@ictlogist), 26 June 2013
Main categories: Cyberlaw, governance, rights, e-Government, e-Administration, Politics, Information Society, Meetings, Participation, Engagement, Use, Activism
Other tags: big_data, cedric_goblet, idp, idp2013, monica_vilasau, ramon_miralles, ricardo_morte, rosa_cernada
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Moderadora: Mònica Vilasau. Lecturer, School of Law and Political Science (UOC).
The use of Big Data to generate behaviours
Ramon Miralles, Coordinator of Auditing and Security of Information. Catalan Data Protection Authority
Service providers are often accused of lack of clear information, lack of specific usage of the data they are collecting, etc. Besides — or added to — this lack of clarity, data is increasingly becoming a source of wealth, and thus leads to changes of relationships of power and new behaviours.
A detailed analysis of big data, can it induce to changes in behaviour? e.g. the Obama team found that women aged 35-50 y.o. usually had many photos of George Clooney on Facebook. After realizing that, there was a sensible increase of the number of public appearances of Barack Obama besides George Clooney and the number of photos that they shared… and which of course were distributed on social networking sites.
But are there behaviours which there is a consensus that they are bad (xenophobia, racism) and which could/should be fought with the use of big data? Is there still room for free will? Should we change our regulatory framework to adapt it to these new realities/policies? Would it be, on the other hand, fair or legitimate?
Or maybe the terms of use could include new clauses (premium clauses?) in which the service provider would inform the user of the usage of their personal data?
Can a robot replace a journalist? Narrative Science’s Quill is able to write human-readable articles or pieces of news after a collection of specific data. A robot implies loss of all editorial autonomy, no verification of the sources, lack of analysis of the information with a critical eye and independence, or the mistaken belief that a machine will be neutral and objective. It is very likely that machine-made pieces of news will result in a tendency towards infotainment and fostering an echo chamber effect.
Big Data: A Challenge for Data Protection
Philipp E. Fischer, Ph.D. candidate (IN3 Research Institute, UOC Barcelona), LL.M. in intellectual property law (Queen Mary University of London / TU Dresden); Ricardo Morte Ferrer, Lawyer (Abogado), Master of Laws (UOC). Tutor for law studies (Grado en Derecho) at the UOC. Legal adviser for the TClouds Project at the ULD, Kiel
One of the main challenges in data protection is the high asymmetries in the relationships of power between service providers and end users: there may be no alternative to that service, there may be not all the information in the terms of service, there may even not be the whole information in these terms of service, etc.
In the administration of Justice, communications usually publish data from the citizens. Before a law of public information reutilization and another law protecting personal data, it is obvious that a conflict arises.
But not only a technical or legal solution is needed, but also a political commitment that settles interoperability, responsibilities, allocation of resources to manage information and data, etc.
9th Internet, Law and Politics Conference (2013)
By Ismael Peña-López (@ictlogist), 26 June 2013
Main categories: Cyberlaw, governance, rights, e-Government, e-Administration, Politics, Information Society, Meetings, Participation, Engagement, Use, Activism
Other tags: aikaterini_yannoukakou, alessandro_mantelero, alfonso_ortega, big_data, giuseppe_vaciago, idp, idp2013, maria_angels_barbara
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Moderator: Maria Àngels Barbarà i Fondevila. Director, Catalan Data Protection Authority
The dramatic growth of participation in social networking sites can be approached from the international private law.
Users normally accept all the terms of conditions of social networking sites. But what law is to be applied? It depends. In these terms it is normally stated what law and what jurisdiction is to be applied. Thus, the user is not protected by the law as there is a high degree of defencelessness as they have to deal with “foreign” laws most of the times.
There is an asymmetric distribution of the control over information. Interaction between the private and the public sector is mediated by these data and this imbalance of power.
There is a political and strategical value of the European regulation on data protection, as there is a predominance of US companies in the ICT sector, which implies an influence of the US administration on national companies.
Indeed, is not only about jurisdiction in terms of what law applies, but also the fact that most data of European citizens are stored overseas (usually in the US).
An added political/strategic/security issue, then, is that the US Administration can require the firms in US soil (e.g. most of all in cloud services) to access all the data in their silos.
Data portability reduces the risk of lock in as it allows for transferring data from one place to another. In this sense, it also reduces monopolistic practices, reduces the power of the service provider and eases establishing more balanced regulation.
E-Health in the Age of Big Data: The EU Proposed Regulation on Health Data Protection
Panagiotis Kitsos, LLM, PhD. IT Law Team, Dept. of Applied Informatics. University of Macedonia, Researcher; Aikaterini Yannoukakou, Librarian MSc. IT Law Team, Dept. of Applied Informatics. University of Macedonia, PhD candidate
What are the challenges that big data poses in the field of e-Health? Many uses so far: drug data extracted from prescription records, devide data collected from implantable cardiac devices, clinical data collected form medical records and medical images, claims and financial data, patient behaviour and sentiment data, etc. All these are already transforming healthcare.
But there are many privacy concerns, most of the related to the possibility to “re-identify” patients even if their respective data has been anonymised.
Another concern is the right to be forgotten in relationship with health records.
Maybe we have to move from what to protect to how to protect.
Discussion
Barbarà: is consent enough to protect the citizen? Is it informed enough to count as valid?
Ricardo Morte: if there are issues with jurisdiction, it is very likely that the citizen cannot appeal to the Constitutional Court. Is that this way? Is there any “equivalent” at the international/European level? Ortega: the problem comes not in what falls within the framework of the (commercial) agreement, which is quite well contemplated by the current regulation, but in what falls outside of the framework of the agreement, in what is extra-contractual.
9th Internet, Law and Politics Conference (2013)