Turning the tides on child drowning
Rebecca Wear Robinson
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Who Owns Data?

by Rebecca Wear Robinson on November 13, 2013

Overwhelming DataData. Measurable. Sustainable. Analysis. Cost-benefit analysis. Statistics.

My heart goes all aflutter at those words. I really love statistics. I am a total geek. These days I am not alone in my love for data. With people as diverse as Bono and Hans Rosling (declared a data visionary by Bill Gates) preaching the importance of data and applying data-driven solutions to the world’s most intractable problems, we in the drowning prevention world know that our programs must be data-driven. We have official data,  though everyone agrees the numbers are greatly understated due to a number of factors. Data-driven programs in SE Asia are receiving high-level interest.   I’ve written about how organizations of any size can begin to gather data to support and measure their progress.  What we haven’t addressed is how to gather and share global data more effectively at a much wider level and why it is important.

Last week I said that we stink at sharing data.  Today I’m going to talk about exactly what I mean by that statement and look at why the old world order regarding data is being turned upside down.

In the old days (>14 years ago), approved data came largely from large organizations and government sources. It was painstakingly gathered, vetted, approved and disseminated, generally 3-5 years after the time period in question. A highly resource-intensive process involving reams of paper and officials at all level of government and coordinating organizations, the reports were/are used to inform high-level decisions regarding the allocation of funding and resources and to analyze outcomes as they circled through committees, departments and bureaucracies.

Then came Google, and Facebook, and that unexpectedly powerful vehicle for social change, Twitter. Is it a coincidence that our obsession with data occurred at roughly the same time that data became so widely available? Of course not. But our ability to collect data on a staggering, previously unthinkable scale does not mean that we know how to handle the new freedom and responsibility that data has given us, which is why we stink at sharing. We don’t trust anyone with the power that data holds because no one fully understands that power, and that scares us. (witness the current concern about the NSA). We haven’t had time to understand the implications of collecting or holding unlimited data or to see how actively sharing data might look.

Large organizations (and governments) are having the most difficult time with the data revolution. They haven’t caught up to the new realities that technology has rendered. They can’t comprehend that data is now available to almost anyone. They use the technology to gather data in new ways, but are still thinking they ‘own’ the data, that it is proprietary, and they have definite ideas about how data should be used. Several of the largest organizations in drowning prevention and prominent government organizations have talked about how they gather data on drowning deaths reported in the news from Google Alerts to create their own database on drowning deaths, part of the necessary work to challenge the global understatement of drowning deaths gathered in the old, less effective, ways. This is an excellent development, but they are not alone in their efforts. Viraj Ramharai  is doing the same, on his own, in Mauritius. I recently peer-reviewed an article for the British Medical Journal for a single researcher who is using the same technique in Nepal. Basically, anyone with a smart phone or a computer can get Google Alerts on drowning deaths delivered to their inbox to build their own database on a depressingly frequent basis.

Data is out there and it is freely available to anyone who wants to search, it is not just for the powerful and well-funded anymore.

So why won’t organizations share their data?  I think it’s a mix of fear and power. Fear of what will happen with the data when it is out of their control and feeling they will lose their power if they share the data they now ‘own’, or perhaps fear that the power will be misused in the hands of others.

There is a legitimate concern about data being used in a way that is ultimately damaging, because once data enters the hands of humans, it immediately becomes biased and impure. Just as with beauty, statistics are in the eye of the beholder. Any statistician with a grain of ability can slice and dice statistics to support or discredit a story and here I agree with expert’s concerns – when we are dealing with a leading killer of our children, we can not risk having misleading, damaging or incomplete stories being told. But here’s the rub, data is useless without analysis. That’s right, data is absolutely useless unless you know what to do with it, which creates a self-limiting component to data. The true power of data lies in analyzing it and using it effectively, and since big data is a new phenomenon, what constitutes ‘effective use’ is subject to ongoing debate – both practical and ethical.

Once we have the raw data we need to manipulate the data ethically and responsibly in a way that does not cause harm, we also need to leverage the data more effectively. Can this be done only by established organizations as it has been done in the past or can this be done by an individual, a small organization, or a social movement? I can not predict how data will be evaluated and used in the future, but I’m tending towards the belief that data will be used in an entirely different way than it has been used traditionally, that it will be used far more from the bottom-up than from the top-down.

The power that comes from empowering an individual, acknowledging them and making their voice heard, to know that their life matters, their views, their struggles, their loss, or their pain, is the stuff of revolution. It has the potential to upend the status quo, and that is frightening to many. We have seen the phenomenon with Twitter and the Arab Spring uprisings, a harnessing of technology to drive powerful social change, something that even the inventors of Twitter could not have anticipated. Once you put information in the hands of many, it changes the dynamics of power, which is what makes it so frightening to those defending the status quo and their own section of turf.

Frequently organizations (and governments) respond to things they cannot control and don’t understand with heavy-handed and ultimately unsuccessful restrictions.  I believe that the real strength of organizations will come to the forefront if they stop defending the status quo and their turf and ride the wave of data to greater strength and effectiveness. Just as data on it’s own is not enough without the analysis to make sense of the data, empowerment on it’s own is not enough unless you provide people with the direction for positive actions to change their behavior and their experience. This is where programs and organizations come into their own. This is where they have the potential for positive change of an unprecedented level – both on collating and providing the data and, especially, in creating and delivering answers and solutions.

Here is my vision of how this could look in drowning prevention. I think we need a pincer-move. We need to give a bottom-up voice to the people affected by drowning, to individuals, and to provide top-down targeted education and awareness from the organizational level – and we need to link them using data. Powerfully, data can be used to connect the human experience, to help people understand that drowning affects everyone in every country, and to unite them in a common goal. To figure out the exact number of drowning deaths in a year, and to engage the public so that they understand that drowning is a global epidemic and can affect them personally, we need to make their personal experience, their personal loss, count. This must occur with a global database that can be scaled up to show global levels and drilled down to specific geographic areas and demographics, but still shows the personal effect of the loss, acknowledges the importance of the life of each person who died.

There are several databases being developed that make data publicly available. National Swimming Pool Foundation is tracking swimming pool deaths and a number of organizations in the UK have collaborated to create a national database.  Rivers and Sense, a UK charity launched an additional database.  Global Drowning Tracker (GDT) is in it’s infancy, but is the only publicly accessible database that I am aware of that is intended to capture drowning death data from all causes on a global level in a way that also engages the public. GDT accepts drowning data via Google Alert news feeds, e-mail alerts or SMS text messages. In other words, it can handle the same data that governments and the big organizations are collecting, plus it can accept information from the 80% of people in the world with a cell phone who are off the grid of official reporting, which could be anywhere from 30% – 80% of drowning deaths.* Once you have a global map populated with drowning deaths, it not only puts the magnitude of the issue in stark visual form, it provides a clear view of where we need to target our interventions, and it creates an audience who is beginning to understand that drowning is a serious issue and a change in their behavior around water is needed.

I’ve heard the concerns that something like Global Drowning Tracker, or basically any system that isn’t controlled by one organization or country, will do more harm than good, that it is potentially dangerous. It’s the constant battle between the desire for change and wanting the change to be the ‘right’ change, the managed change. There is no perfect world. Change is, almost by definition, chaotic. Of course data going into GDT needs to be verified, because again, data is only as good as it’s sources and how it is used. Sensitive data needs to be adequately sanitized to protect privacy and ensure that those who input personal data are not concerned about being prosecuted or persecuted. But what the detractors are not understanding is that technology like GDT is the future. The time for large entities to control the agenda and dictate how people use data is shifting rapidly, but if they embrace this movement they will see greater success in their own efforts as the demand for their programs will increase as well. But they must be willing to collaborate and share data responsibly. If there is another system in place than Global Drowning Tracker that has the capacity to be the fulcrum for the pincer movement, I am not aware of it, but we need the fulcrum, we need to forcefully meld data and positive action by leveraging technology.

Data is not the answer to the epidemic of drowning, it’s a tool. People are the answer. One person can start a movement, can kick-start a change in attitudes and behaviors, as Viraj is doing in Mauritius, but global change will only occur with wide-spread collaboration among all the players, the true collaboration I talked about last week, but extended from individuals, through organizations, and all the way up to governments and global organizations like the WHO and the UN.

We can go bold, or we can go home. I say we go bold. I say we surf the tidal wave of data, that we use it to empower people, to maximize the effectiveness of the incredible programs and initiatives that individuals and organizations around the world have developed, and are developing every day. I say we share data and bend it to our needs, not be controlled by something that has no meaning without human interpretation.

* 30%-80% is a total shot in the dark estimate. I’ve heard official reports from high-level agencies that estimate the global drowning toll is underestimated by two, three, four times. We don’t really know how under-reported drowning is at this point – but unless we shift our ideas on how to capture data, we never will.

In the interest of full disclosure, I’ve been working with ISLA (insert link: www.islasurf.org ), who developed Global Drowning Tracker, for almost a year advising them on business/strategy issues. I have no financial ties to the organization. I independently support Global Drowning Tracker vocally, and with my expertise, because I believe this is a critical tool to collect data and raise awareness and is unique in it’s ability to balance bottom-up and top-down information in a way that has positive technological implications for drowning and other social issues.

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