People - we need your big data
Jinfo Blog

By Joanna Ptolomey

Abstract

The McKinsey Global Institute reports that if the US healthcare system were to use big data creatively the result would be a $300 billion value every year. So what about people information or patient derived information? Surely this is a huge missing chunk of big data that is also floating around in the digital information world.

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The McKinsey Global Institute reports that if the US healthcare system were to use big data creatively the result would be a $300 billion value every year.

That is about an 8% reduction in US healthcare expenditure. That is serious potential savings to be made from disjointed sources of healthcare data already in the system. The McKinsey report in particular makes reference to pharmaceutical R&D data from clinical trials, claims and cost data from providers and payers, consumer data from health related purchases and clinical data from electronic health records.

But what about people information or patient derived information? Surely this is a huge missing chunk of big data that is also floating around in the digital information world.

Think about a single tweet. Isolated, it makes little sense and perhaps insignificant. But follow the conversations on Twitter and you begin to unlock conversations and stories. A different kind of evidence.

An interesting study analysed over 2 billion tweets to unlock the insights in public health. Comparing the twitter results, with data from the Centers for Disease Control, it showed that Twitter could accurately track the spread of influenza, peak of allergies and disease spread over time.

People share information all the time about their health. They share not just the clinical side of things such as the drug or therapy interventions but so much more. How they feel: their mental wellbeing, adverse reactions to therapies, their ability to function, what they have learned about managing their condition or situation. This people information is like gold dust. If you can capture and harness it there are possibilities for shaping more focused clinical services delivery and identify on-going information needs for patients.

Social media networks provide platforms for people big data collection, but peer to peer networks using social media technologies also play an important part.

Networks like Health Unlocked and Patients Like Me allow patients to share information. It can be about their treatment interventions, diagnoses, compare their experiences and ask for advice from peers. With a more informed patient, and empowered patient, shared decision making becomes realistic in the doctor patient relationship.

The healthcare sector could learn a lot from patient big data. Having a better understanding of health conditions and their management and what this means for services design rather than this is what we think you need, this is what we know that need.

The Wall Street Journal thinks the next big data frontier is in healthcare, especially from people that are not even ill.  But there is a caveat. Social media, and especially gaming and apps, allows information to be collected from people that would not normally have information collected from. However there is a regulatory side to this information collecting – government departments and healthcare providers don’t like holding personal health information. But could regulation impede the good that big data may bring?

People big data has the power to influence and help co-design healthcare systems and services. But will regulatory compliance work against it?

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