You may have heard that data is the new oil [1], but we are here to tell you that there is a lot more to the puzzle than a simple mantra [2,3].

Summa was founded in 2017 by medical students Matthew Hope and Evan Porter. Our mission is to make sharing simple because we believe in data. We believe data can transform health and healthcare. We believe data can advance our understanding of the human condition. And thus, we believe data can transform the world.

Everything we do revolves around our belief in data. That is why we take the issues involving data so seriously. In 1982, then-California State Senator Steve Peace authored a bill to statutorily recognize personal identifying information as an individual’s “property”. The credit reporting industry-led opposition defeated the bill, giving way to what we call the Data-Industrial Complex [4]. This system props up today’s social media and tech giants that use ‘free service’ to justify the appropriation and commercialization of our personal data. This is the backbone of data brokering, data-driven advertising, and other data-centric markets in the 21st century.

As the value of data has grown, so has the incentive for large organizations to consolidate data in data silos, and for middleman data brokers to charge a fee for access. As a result, we are witnessing the rapid expansion of mismanaged, inaccessible information in a world growing ever more reliant upon data [5,6]. This stifles innovation. Everyone from marketing firms to academic and healthcare organizations suffers.

Security breaches, privacy exploits, and data abuse are also on the rise. The Facebook-Cambridge Analytica [7] scandal challenges us to reckon with the issue of data privacy and consent. The Equifax [8] hack challenges us to consider the consequences of large corporate middlemen consolidating personal information and precluding individual control over personal data.

In order to realize the true promise of a data-driven world, we must first address the problem of control over data and how it is shared. We believe in an individuals’ right to control how their information is shared, with whom it is shared, and for what purpose it is shared. Putting people first is the only way we can realize the full potential of data. We do this by breaking down data silos and centering data around the individual.

Part of putting people first is acknowledging the ways in which data sharing produces social good. While there is nothing wrong with a shoe company asking consumers questions in order to help sell shoes, our focus is elsewhere. Facilitating data exchange in areas like research and healthcare means we empower change agents who generate novel insights, innovate, and provide health and well-being to society. We do this by offering researchers and clinicians a mechanism to collect subjective survey and objective health-related data directly from individuals who believe in the work they are contributing to.

We created the Summa System because although we believe in data, we believe a whole lot has to change in order for big data to pay off. So let’s get to work changing how society understands data, and put power back in the hands of people – the people doing great work in academic research and clinical care, and the people willingly contributing to their great work by sharing their personal data.

 

  1. https://www.economist.com/leaders/2017/05/06/the-worlds-most-valuable-resource-is-no-longer-oil-but-data
  2. https://towardsdatascience.com/data-is-not-the-new-oil-bdb31f61bc2d
  3. https://www.wired.com/story/no-data-is-not-the-new-oil/
  4. https://ivn.us/2018/04/12/data-industrial-complex-we-do-not-destroy-our-enemies-we-change-them/
  5. https://www.informationweek.com/strategic-cio/it-strategy/data-silos-now-and-forever/a/d-id/1333246
  6. https://www.ni.com/en-us/innovations/white-papers/14/hidden-costs-of-data-mismanagement.html
  7. https://www.nytimes.com/2018/03/19/technology/facebook-cambridge-analytica-explained.html
  8. https://www.washingtonpost.com/business/technology/equifax-hack-hits-credit-histories-of-up-to-143-million-americans/2017/09/07/a4ae6f82-941a-11e7-b9bc-b2f7903bab0d_story.html?noredirect=on

 

 

 

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