Trust needs to be earned on personal data

Raymond J. Baxter, senior vice-president at Kaiser Permanente, on why a culture of trust will help us reap the broader benefits of personal data.

The vast amounts of personal data that have come into being in the past 10 years represent an opportunity to create significant social and economic benefits for all of us. However, to gain this value, we must rethink – in sensitive and nuanced ways – how to engage individuals in the use (and reuse) of their personal data.

Like much in life, achieving this balance will require a renewed emphasis on the role of context in our decision-making. Technology and innovation are advancing faster than our social and governmental conventions, so fast that relying on one-size-fits-all approaches to data just won’t be effective in the long term. Organizations of all types need increasingly to work together, to find and demonstrate new ways to maintain the right mix of trust for personal data to flow.

There are an increasing number of examples of the benefits when personal data is used for broad social purposes, beyond the traditional individual intentions. For example, medical researchers at Kaiser Permanente using a robust database taken from the personal medical records of related family members, from 1995 through 2002, demonstrated that children who were prenatally exposed to mothers who used antidepressants had more than twice the risk of developing autism spectrum disorders. By discovering this correlation and leveraging data in new ways, lives are improved.

To unlock this value, today’s leaders have an increasing obligation to rethink their approaches to the use of personal data and the role of the individual. New approaches are needed that help individuals to understand how and when data is being collected, how the data is being used and the implications of those actions. Simplicity, efficacy and usability should lie at the heart of the relationship between individuals and the data generated by and about them. Organizations of all types need to engage and empower individuals more effectively so that better choice and control can be delivered. Trust needs to be earned.

The Personal Data project of the World Economic Forum harnesses cooperative, collaborative efforts to address the dynamics of personal data and data-driven value creation. We can improve the way people understand their own data, its use and reuse, by deploying new analytics and enabling more methods for individual engagement. Individuals must understand trade-offs in the use and reuse of data about them, especially when the data is outside traditional healthcare contexts and uses. Big trust drives big data value, and we are in the right place at the right time for next steps.

Raymond J. Baxter, PhD is Kaiser Permanente senior vice-president, Community Benefit, Research and Health Policy.

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