02
Jan 17

Building an initiative about earthquakes

By: K.Tatakis

Two friends in Italy decided to act, as a devastating earthquake happened last August. Their initial idea was to create a group on social media but then also a website was born Terremoto Centro Italia.info. The initiative became famous as an open source platform where everyone helping or needing something in or about the devastated zones could share information and thus organize more efficiently her or his own wishes.

Matteo Tempestini and Matteo Fortini were the two friends that originally had this idea and dared the next step.

“This idea was born on August 24 (2016), when we had a very big earthquake in central Italy. We decided to create this project in order to have more information about this event.We are friends with Matteo Fortini and we always keep in touch. In the morning of August 24, we discussed in a chat and we decided to open a group on Facebook immediately and then, the day after, we created the website” Tempestini said in an interview I made with him on November 20, 2016.

“The Facebook group became popular immediately as Facebook is full of people. What we initially have done initially on Facebook, was to call people to get involved and explain what we are trying to do. We wanted to create tools to inform someone about the earthquake. It is not that simple to explain. We have a lot of associations and communities that keep in touch with us, people that are in field and explaining other people how they can use the platform we had created. This is very important. Thus we are involving people that are really in the epicenter of the earthquake. That is the most difficult thing to do but is what to be done in order to have real, first hand information about the earthquake” Tempestini explained during the interview.

“Since the beginning we had the support of organizations like Action Aid Italia that believed in this project and gave human resources to support the idea, but also open street map activists that gave tools for the emergency, like maps for people in the field. When a disaster happens in Italy people create spontaneous associations to rebuild their cities” Tempestini adds.

They even offered helped to build a similar initiative in New Zealand after an earthquake happened there recently. We don’t want to impose anything. This is a solution for aggregating information we have in social media channels and it is all open source and re-usable” Tempestini argues.

Connecting needs to offers faster is crucial

What a country can do in order to be more effective in emergencies?

“I think that Italy is very well organized to manage crises in field but in my mind there is some miscommunication sometimes, so we can now we can increase communication through Terremoto Centro Italia . If you want to improve this aspect you should create what I call the Internet of people, instead of the Internet of things. Before the crisis you have to create a network of people, the right channel to communicate something. This is very important. If the people are educated to communicate what’s happened in their community, we can really use the crowd-sourcing afterwards. If you combine the real needs in crisis and the offers existing, then you can solve the problems much faster” Tempestini declares passionately.

Matteo Fortini starts his own narration about the initiative: “It was in the morning of August the 24th when we were watching news about the earthquake. I live in a place which was hit by an earthquake in 2012 so I lived the fact that we need quick information about what was happening and what to do and we talk about that with Tempestini. Both of us were on Twitter and Facebook, on social media. We were seeing that on Twitter, I found that Twitter was a very powerful source of information , there were different sources but not talking at the same time. There was not a single source of information to find together everything related to the earthquake, on social media. Tempestini opened very quickly a Facebook group to try to share information in a more organized way and after that we followed with Twitter,Telegram and everything else”.

In just three months since its opening Terremoto Centro Italia.info became an established initiative in Italy.

“My closest friends were more on-line than off-line. They jumped on the project and started helping in the ways they were able to. One of the strengths of this project is that everyone contributes on what she or he can do best. There are people taking care of social media, others writing code and whatever else. I had friends that helped me a lot, not virtual, but real friends that I connect through social media that helped me a lot” Fortini explains in an interview I made with him on November 20, 2016.

Even in countries which developed sophisticated systems for emergencies, a multiplatform that grabs and organizes information can give great assist:

“We have in Italy a Civil Protection (Protezione Civile) which is very well organized, but they need to take very clear steps in order to help. When the earthquake happened media like TV crews were going to interview persons under rumble and they were telling people to call emergency numbers, but the telephone could not run as efficiently in the very first moments, as telephone lines were extremely crowded.

We thought in that moment Social media as a way to share information and to share issues that we were finding. Redundancy (duplicating things in order to increase reliability) is the best in these cases. We don’t want to overtake any other channel of communication but we want to try together and to get a redundancy about the different sources of information in order to get the information to the right place as quickly as we can” Fortini said.

How they got connected to local people? Fortini gives an example:

“We met some people from the affected area, very young guys which formed the association Chiedi alla Polvere / Ask the Dust, very young people with interest of staying there and helping people in that place which I think is very meaningful”.

“Around 20 persons help as volunteers every day but altogether approximately 50 people help when they are asked” replied Fortini when asked on November about the number of persons involved.

NOTE: Product or corporate names may be registered trademarks or trademarks and are used only for identification and explanation without any intention to infringe


14
Dec 16

Big Data in healthcare: Dr Jekyll or Mr Hyde? Part II

Part II: the bad Mr Hyde?

By Athanasia K.

In a previous post, I have tried to show that Big Data applications could offer innovative and effective solutions towards better healthcare services.

Despite the very many promises however, Big Data applications in healthcare are not a panacea against all evils, but could also result in negative impacts with challenging aspects. And these challenges are still out there, unresolved for years now, despite the exponential technological development of the field.

In developed countries, one of the biggest concern seems to be the protection of personal data, which is even more sensitive when this is medical data. Kaplan very rightly notes that “data can be sold and replicated anywhere and, once sold, may be used for good or ill”. Furthermore, as Lunshof et al have showed, with the current IT technology we have, privacy and confidentiality can no longer be guaranteed. On the contrary, when we are dealing with the analysis of genetic samples, the re-identification of data samples back to their donor is more than possible, as Malin et al showed some years ago. But even if indeed there is a way to security and totally anonymise the samples in a genetic database, this can limit the usefulness of the data, as showed by Budimir et al.

One more point of concern on the impact of Big data in healthcare is that not all data are reliable. In fact, “people change their behavior and withhold information in order to protect their health information privacy” and  “according to a 1999 survey, nearly one in six patients withheld information, provided inaccurate information, doctor-hopped, paid out of pocket instead of using insurance, or even avoided care” as Kaplan notes. This has lead experts to fear a GIGO effect (e.g., garbage in–garbage out), and to a questioning of the reliability of this methodology to vulnerable groups and poorer regions, as also analysed previously by Shahin. However other scholars such as Alemayehu argue that “although much of real world data is sparse and a lot of the data is ‘‘dirty’’, with proper analytical, computational and data management tools, it is still useful and can support health policy decision-making”.

Adding to this conundrum of confidentiality vs usefulness, the lack of transparency in the acquisition and ownership of the data also adds more question marks in the field. It is common practice that Big data vendor companies do not disclose their contracts on the acquisition these data. As Kaplan notes, the legal framework in the United States and abroad ”does not address health data ownership clearly; it is not clear who the owner should be … Furthermore, it is also not clear where those who sell data analytics services obtain the data, or how they might use them.” Furthermore, as Kaplan continues, “vendors often consider their contracts intellectual property and do not reveal these and other contract provisions”.

But who benefits from this?

One could very logically assume that the companies involved in Big data do gain some sort of profit from this business. But what about the rest? As Kaplan notes, “the cost [of data gathering] is passed on to patients and payers, whether private of confidential. These individuals gain little benefit from the aggregation and sale of data about them, and they may even be harmed by it”. Indeed, Kaplan continues, “patients can be harmed when data about them are violated: to deny employment, credit, insurance”.

This unbalance of the distribution of benefits is more evident when we look in developing countries. As Rudan et al note, nearly all biobanks (at least back in 2011) “have been developed to address the health problems relevant to the minority of people living in wealthy countries”.  This has caused reluctance in developing countries to share their national data or permit foreign researchers to access them, in fear of exploitation. An example to illustrate this better is the one cited by Staunton and Moodley, where in “2007, Indonesia refused to share its H5N1 samples without a legally binding agreement which addressed among others, benefit arrangements and intellectual property rights”.

Apart from the benefits’ unbalance, one more real concern regarding data collection in healthcare is about the possible stigmatization of the patients in case the confidentiality of data is breached. This has been reflected even in court cases, where, as cited by Staunton and Moodley, in April 2010 the Arizona State University paid 700,000$ to the Havasupai Indian tribe as a settlement against claims of an improper use of blood samples which stigmatised the tribe. This fear of stigmatisation is also reported on African studies, where research participants fear about discrimination and possible stigmatisation of themselves and their family (see again the Staunton and Moodley paper). This aspect is more difficult to tackle since cultural differences make the analysis more difficult. As Kaplan notes, what is considered as very private, embarrassing, stigmatising, or posing grounds for discrimination varies among individuals and groups, and also differs between cultural backgrounds, places or time periods”.

But is it all that black and white, Dr Jekyll vs Mr Hyde situation when we speak about Big data for healthcare? In a forthcoming post, I’ll try to maybe find a third way of looking at this.


12
Nov 16

Wearables, big data and traffic regulation

Wearables and traffic. Photo and drawing by K.Tatakis, November 2016

By: K. Tatakis

Big data could help citizens in numerous ways and it’s up to our phantasy to invent new uses. In this short post I will work on the subject of wearables, big data and traffic regulation, something very useful globally as urbanization advances rapidly at a global scale. Wearables with GPS geo-localization that will count the number of citizens waiting in a metro station platform could be meaningful to reduce human stress and delays. Such delays are the reason for many missing meetings as employees (and even employers) arrive often late at work due to such disturbances. Big data could give traffic controllers the opportunity to augment the frequency of metros’ in a particular metro rail line until demand from passengers to enter wagons drops. But it is not only trains and subways where such an idea could be used.

It could be used to count passengers in a particular airport or a particular airport desk, to count drivers willing to take a turn towards a big highway and so on (especially when connected with route plans that people have picked in their digital traffic advisor). That will resolve many of today’s problems citizens daily have in large urban areas all over the world, from Shanghai to New York.

A particular scan of data could even calculate the number of social media messages about high traffic in a particular area and thus to help who organizes the traffic to send more buses, taxis or trains to relieve a problem. In such a case an alert level could be set, when for example messages about traffic are more than 50 in a small neighborhood.

In a less developed country where people don’t have enough money to buy these new gadgets, SMS could be traced in order to inform if particular products are available in a small local market of a poor African country. Linnet Taylor and Ralph Schroeder open up very interesting questions about big data in one of their recent articles. They inform about the MIT’s “Billion Prices Project (Cavallo 2013 in Taylor and Schroeder 2015, p.504) which is a similar idea but at a much larger scale.

Will citizens be more willing to provide such data if they can immediately use the outputs of such a survey? I think yes. Where positive results of an action are immediate and more tangible, people will feed such initiatives with more data for their own good.

Many companies that provide GPS orientation programs provide updated information about traffic in big cities. What if all these could be transformed in an all – included program which will combine road, train and air traffic and that will really inform about traffic jams in order to avoid delays. Buying tickets and the opportunity to see tickets availability would make such a program far more desirable.

A big fear of today’s citizen in a big metropolitan area is sudden traffic chaos. I think that people are ready to accept less privacy when outcomes really help them immediately towards a better life quality.  Αfter all improving our lives is  a form of social change.

 

 

blog-pi-header1

Social media, big data and development (Drawing by K. Tatakis, 2016)

A critical question is where data scan and elaboration will be done (Taylor & Schroeder, 2015, p.504). Let’s suppose that a heavy traffic jam hits Mombasa. Are local authorities ready to use such technologies or this will add new costs to the local economy, as technologies and scientists will have to be imported? The two scientists also inform about the dangers of a “top-down approach” ((Taylor & Schroeder, 2015, p.504), where questions (of data surveys) and needs are simply guided by officials both in national and international organizations and are not necessarily what people ask about.

Talking about the digital ethics and the digital concerns over big data was something very trendy during the last ten years. Can we talk about politicization of data in such a field, in a way similar to the one Taylor & Schroeder discuss about over other development issues (Taylor & Schroeder, 2015, p.506)?  My answer is yes, as decisions that will follow the use of these data (the decisions of traffic controllers for example will affect the lives of thousands of people). After all it is a political judgement what you consider high traffic in your polis (city) and the decision you make to inform others on social media. Speculation over the use of traffic control data could affect the elections in a large metropolitan area, if a candidate will blame the current mayor that she/he is not doing enough to press for more metro’s wagons in a particular line. But it will also affect private companies’ profits, positively or negatively.

Reviewing Taylor’s and Schroeder’s article, I can notice that one of the most important questions they pose is “what ‘development’ means to data scientists” (Taylor & Schroeder, 2015, p.508). How were they educated on development (both in class and from the environment they have lived) and how that will influence their choices?

They also pay attention to the fact that not all scientists gain allowance to use big data. They need prior reputation and good connections in order to gain such a permission. Thus only a small circle of scientists could end up on using big data (since big data is not always open data) and the rest will be constrained to do what is a small scale data research or a qualitative research(Taylor & Schroeder, 2015, p.510). The two scientists stay on “power and knowledge asymmetries” (Taylor & Schroeder, 2015, p.516) and insist on education of people about their rights (Taylor & Schroeder, 2015, p.516). When entering what I would call this new marvelous world, the world of big data, you have to take account of such complexities.

 

References

Taylor, Linnet & Schroeder, Ralph (2015). Is bigger better? The emergence of big data as a tool for international development policy, GeoJournal (2015) 80:503-518

 

 


10
Nov 16

Italy: Earthquakes create discussion and innovation

By: K. Tatakis

Earthquakes create notoriously big crises. When such natural phenomena suddenly strike communities causing fear and despair, humans try to find ways to be more helpful and effective. Earthquakes trigger solidarity and work as a stimulus for innovative ventures. Human energy comes out of the rumbles.

A big earthquake hit on August 24 the regions of Marche, Umbria and Abruzzo in Central Italy. Little townships like Amatrice and Accumoli were heavily devastated. Such regions were historically struck by earthquakes again and again during the last 5 centuries, but loss of lives was this time quiet high, compared to similar phenomena to other parts of Europe during 21st century, as many of the buildings were medieval and old stone structures.

Italy’s earthquake happened approximately at 3 AM local time and Twitter was a source of information particularly helpful to night- shift journalists. From the very first moment appeals to free Wi-Fi networks and help who suddenly stayed homeless in the middle of the road or had to search for missing persons were made in Italian social media.

Some insisted traditional during crisis

But initial calls for rescue generally happened the more traditional way.  Calling the emergency numbers of the Italian Firefighters, State Police or the Carabinieri. Calling for rescue via e-mails or digital apps was not the norm in the Italian case.  Despite this country is a member of the G8 and technologically far more advanced than Haiti, people preferred to make their calls mostly by phone and not via social media. Writing short messages like Meier suggested in the case of 2010 earthquake in Haiti was not very easy-going for someone desperately urging out of home, in the middle of the night. In most cases cellular phones and other more valuable items where simply left behind in an agonizing attempt of people to save their lives into the dark. An exception could be the case of a nun living at the Religious Institute Don Minozzi in Amatrice. She appeared on RAI News 24 TV Channel the days immediately after August 24 explaining how she sent SMS when living under the rumbles. But her case was not a call for help, rather than a “talk” of a person ready to die with her most beloved, sending ad Dio (to God) messages.

Source: Ministero dell’ Interno / Vigili del Fuoco (Italian Ministry of Interior / Italian Firefighters) https://www.youtube.com/watch?v=A_pH6nbQMFY

On the other hand people turned massively on Social media to inform and discuss about the earthquake and to talk about reconstruction and solidarity initiatives. Social media (mainly Twitter and Facebook) were the absolute protagonists in that sense. Citizen’s involvement in social media, this time locals and not mostly foreigners as Lillie Houliaraki (2013, p.273) noted for the case of Haiti’s 2010 earthquake was much more evident in the Italian case. Campaigns for collecting money and blood but also to inform people on what to do during an earthquake started in a few hours. Facebook also activated Safety Check in order to find missing persons.

In his recent book Patrick Meier informs of a network that he and his peers gradually built in Boston in order to help Haiti hit by the 2010’s earthquake They were based on some of the most innovative technologies and the help of volunteers all over the world(Meier, 2015,p.5).

Meier’s positivistic view over big data is not at all unjustifiable. Big data can help in emergencies situations, but more importantly on monitoring health issues. In his book Meier’s suggests to enable GPS localization in our digital devices in order to be located during an emergency (Meier, 2015, p.175). In the Italian example, at least when looking at the initial earthquake of August 24, it is difficult to find cases that people where traced under the rumbles thanks to their GPS signals. There are two main explanations for that. The time that the earthquake happened (too early to carry a mobile phone with you, unless you slept with one in your pocket), but also the desire that often people have in more advanced societies to live under anonymity. In other words reluctance to share such personal data in big networks.

Meier supports the idea of “microtasking” (Meier, 2015, p.65) sharing small missions with volunteers in order to act faster and to save more people during a disaster. Such a task may sometimes require educated people with basic technological knowledges, but it is a meaningful idea over social change. According to Meier such a microtasking helps to enable better validation of sources, which is a real headache for people working on the social media. More eyes and more brains can check better what is originally published on the web (Meier, 2015, p.65-66). Similar projects are heavily based on “consensus” (Meier, 2015, p.68). People have to believe that big data is the next big thing and to share more data, in order to make the stats work for social change.

Transparency and big data

Transparency is another hot topic. All should contribute on giving data. But the next point is why not to make these data available to all? In one of his recent books about communication Manuel Castells underlines as an exchange, a reciprocal flow which is based to “interaction” (Castells, 2011, p. 55). How much of these data should be open and where it is advisable to be protected for reasons of personal privacy or security? That’s an ongoing discussion that will last for the whole century in my opinion, as it is a very complex matter.

Who will check the use of huge databases, once data often collected from private companies for profit? Will be any regulators to control such a use or the whole sector we will be left to the self-regulation of large private (or even state) entities for the common good?

Thoughts over data use transparency are in this sense a little limited in Meier’s book. The author prefers instead to develop more the concept of ‘democratization” of data (Meier, 2015, p.187) which is similar to data transparency, but not identical. Transparency over the use of data, but mainly over the control of data is what will be a cardinal point of conflict in the 21st century. Who will get control of these data will have a new soft but enormous tool of power, whether private or state entity… May be that’s inevitable, once you need huge amounts of money, resources and persons to carry over such a digital revolution. But politics over the use of these data should be clean and clear and citizens must have their say. Education over big data will also be cardinal in order to take the most positive things out of them. Citizens, companies, researchers and states should decide together about the future.

Overall Meier’s book is a must read for someone wanting to work with big data for humanitarian purposes and opens up many new windows of thought that will ferment new ideas in the future.  Stats and mathematics are better and more reliable than emotions as guide to who really needs help in an emergency situation (Meier, 2015, p.47). And it’s up to who will take decisions to make the best use of them.

 

References

 

Castells, Manuel (2011). Communication power, Oxford – New York: Oxford University Press.

Houliaraki, Lillie (2013). RE-MEDIATION, INTER-MEDIATION, TRANSMEDIATION, Journalism Studies, 14:2, 267-283

Meier, Patrick (2015). Digital Humanitarians: How BIG DATA Is Changing the Face of Humanitarian Response, Boca Raton: CRC Press.

NOTE: Product or corporate names may be registered trademarks or trademarks and are used only for identification and explanation without any intention to infringe

 

 


01
Nov 16

Big data, privacy and ownership

Shahin Madjidian

Introduction

Studying big data critically leads to several interesting topics which can be examined and developed. In a string of four blog posts this is exactly what I will do. The first post is perhaps the heaviest as it deals with ownership issues, democracy and whether or not big data can be seen as something revolutionary that will lead to social change.

I will start with a short analysis of the individual’s right to his/her data and then move on to the macro level – who owns the data, who can store it, analyze it or draw conclusions from it, and later act on them?

Privacy

Today, most people in the world leave digital fingerprints as we go on about our businesses, whether we like it or not. This data gets stored and many times analyzed and acted upon by the actors who picked up the data in the first place. The data can be anonymized and used in a big data set where it is very difficult, or even outright impossible, to identify individuals, or it can be used to improve targeted commercial ads suited for a unique individual.

Privacy issues have been raised, especially as individuals have very few possibilities to reject the data collection. Spratt & Baker argue that algorithm transparency is important, as well as the fact that people should be allowed to know which data is stored on them and where. They suggest that “all individuals have the right to control their own personal data, and can choose to sell as much or as little of this as they like” (Spratt & Baker 2016:30). While this sounds laudable, there are several problems which are ignored. How will an individual get access to this data and where can s/he store it? What about situations when the individual requires money or are in other desperate situations and decide to sell data, doing a trade-off between short-term gain in favour of perhaps long-term exposure? Which population sectors in which countries may be most prone to do this?

In reality, as Spratt & Baker note, consumers may object to their personal data being bought and sold, but in reality have very little control over it once it has been collected (Spratt & Baker 2016:12). This leads us to the next section, namely who these holders of data are.

Ownership and “usership”

The main holders and owners of data today are big corporations, especially those in the social media and communication sectors, and government. Often, data collected from actions and events are used to create new forms of value in innovative ways, as “the system takes information generated for one purpose and re-uses it for another” (Mayer & Schönberger 2013:97, 103). The trick is in finding secondary usage of the data and as a result, hidden correlations which may turn out to be highly valuable. Related to the privacy issue, it is very difficult to prohibit something that has not yet happened, to prohibit uses of data which the data owners have not previously thought about.

Read et al. argue that “if the power of initiative, design, funding and analysis still resides with the tech-savvy individuals and organisations based in the global North, then it is difficult to concur with the view that technology is empowering or liberating” (Read, Taithe & MacGinty 2016:12).  This notion is amplified in the global South considering “the growth of private-sector involvement in public infrastructure projects across the globe” (Lovink & Zehle 2005:10), with infrastructure here broadly meaning Internet and cellphone development.

A few huge corporations have taken the lead in the use of big data and to remedy this, Spratt & Baker propose state support to startup companies within the field in order to learn and become more competitive (Spratt & Baker 2016:26).

Are there any possibilities of individuals becoming owners, analyzers and users of big data? Meier certainly believes so, and I will return to his book “Digital humanitarians” in a later post. For now, I will use his own words against him, as he writes that big data can easily turn into information overload and that the data coming in during one of his humanitarian efforts was simply too much for him and his hundreds of volunteer to handle (Meier 2015:4, 50, 52).

It is not only the vast amount of data that makes it difficult or impossible for individuals to use, but also its messiness and complexity. The data comes from different sources, in a wide variety of shape and form, many times unclear and fragmented. The technologies required means that big data use today is limited to a few actors. Individuals, or groups of individuals, are usually not among the lucky ones.

Mayer & Schönberger have a somewhat romantic view of the future development, believing that just like everyone with cell phones has the potential of being a “journalist” in the broad sense, everyone may be able to extract and analyze big data as “tools get better and easier to use” (Mayer & Schönberger 2013:134). It may not be necessary to be a statistician, engineer or software developer working for a government agency or Facebook.

Conclusion

While development may allow more people to become big data users, today’s actors will have a huge head start. Furthermore, Mayer & Schönberger predict that data owners will increasingly be in the most lucrative position in the future (Mayer & Schönberger 2013:134) and as long as the privacy laws are not changed, the data owners will be social media and communication corporations, not individual citizens.

I agree with the somewhat glum view of “although cloaked in an the language of empowerment, data technology may be based on an ersatz participative logic in which local communities feed data into the machine /…/ but have little leverage on the design or deployment of the technology” (Read, Taithe & MacGinty 2016:11).

In many ways, big data is revolutionary and holds great possibilities for humankind, but used within today’s societal and economic logic, it is but a furthering and strengthening of the status quo, with little to none possibility of empowering individuals or inciting social change.

REFERENCES

Lovink, G. & Zehle, S. (eds.) 2005: The Incommunicado Reader. Amsterdam: Institute of Network Cultures

Mayer-Schönberger, V., Cukier, K. 2013: Big Data: A Revolution That Will Transform How We Live, Work, and Think. London: John Murray Publishers.

Meier, P. 2015: Digital Humanitarians: How BIG DATA Is Changing the Face of Humanitarian Response. Boca Raton, FL: CRC Press.

Read, R., Taithe, B., MacGinty, R. 2016: Data hubris? Humanitarian information systems and the mirage of technology, Third World Quarterly, forthcoming

Spratt, S, & Baker, J. 2016: Big Data and International Development: Impacts, Scenarios and Policy Options. Brighton: IDS.