Data at the speed of life

Experts discuss how access to big data can advance patient care. 

In a world of technology moving at a breakneck speed, detecting and analysing health situations as they happen in real time is no longer an impossibility, as more and more monitors and sensors inundate the industry with massive amounts of data.

Stuart Brown, senior consultant and data governance lead at Zenith Solutions, has a label for this phenomenon: advanced analytics “at the speed of life”.

The range of data collection systems across the industry are part of the ‘big data’, which is today’s hot topic in health care and biomedical research. Brown said the sources of this data did not previously exist, or at least were not integrated. These sources include sensor or machine data, click stream data, social media, photos, audio and video.

At a conference, he once shared a fortunate case of big data at work in the UK. A young girl named Grace Freeman had retinoblastoma in one of her eyes. “This was identified by a very experienced pediatrics nurse that noticed a white reflection in Grace’s pupil on a photo that her mother casually posted on Facebook.”

The nurse immediately contacted Grace’s mother to undergo tests and subsequently saved Grace’s life, Brown recounts.

“Imagine being able to identify and analyse that sort of stuff within seconds or minutes of uploading a photo. There are smart phone attachments and gadgets being developed in Silicon Valley and by start-ups worldwide that can do that exact sort of thing,” he said.

To elaborate, Brown, as well as other speakers from the Big Data 2013 conference, discussed with Nursing Review how health professionals can gain from big data.

Sci-fi material

Brown said the practices within big data are not new, but its recognition as a distinct discipline is.

Thus, the industry as a whole is still debating a single definition.

“In a nutshell, we are talking about the advanced analytics of an increasing volume of data, at a speed previously unfathomable, and from a wide variety of sources,” he said.

Health professionals should know about this, said Brown, because at the end of the day, this data can “quite simply save lives”. Technology can scan and categorise audio, video, and photos based on the metadata defined by the data scientist.

“This is the sort of technology found in science fiction movies. Imagine being able to trace an outbreak or epidemic almost as fast as people show symptoms. Imagine being able to detect rare conditions based on photos that people paste on Facebook,” he said.

Pharmacovigilance

According to Fiona Stanley, distinguished research professor at the University of Western Australia, big data is “… the ‘new’ large data sets available in genomics, social media, as well as the large population data from government and other agencies”.

Stanley said the term also includes our increasing technical capacity to link and analyse very large amounts of complicated data to solve the range of complex problems in our society. How we can access, manage, store and analyse this data is the challenge.

“Health professionals as a group should be more aware of ‘big data’ than many other professional groups because of its promises”. That is, they may understand causes of diseases, evaluate all aspects of services, and improve individual patient care, she said.

“A really exciting big data idea is one we have been trying to get up in Australia for some years,” she shared.

“When we set up the population based register of birth defects in WA, we were driven by the then recent thalidomide disaster and coming close afterwards was a similar disastrous diethyl stilboestrol catastrophe.

“The proposal to link all health outcomes – not just birth defects – to all prescriptions (the PBS) is one that would enable pharmacovigilance for all Australians, enabling the monitoring or detecting of adverse drug reactions, post marketing drug surveillance and detecting the extent to which new drugs were being appropriately used, or not.”

This approach has been clearly demonstrated by the preliminary work done in WA by Dr Lyn Colvin and Professor Carol Bower, linking births and birth defects to PBS, she said.

Big privacy

Big data, simply put, means “variety, velocity and volume,” said Emma Hossack, CEO of Extensia.
Hossack explained that it is a parcel of data big enough to be processed in traditional ways and with traditional tools. It can improve health professionals’ clinical process despite limited resources and can provide better health outcome.

For example, the kind of data that had been collected through big data, she said, has enabled health professionals to intervene in fateful situations, such as “a time most opportune to stop the infection spreading among premature babies”.

Big data depends on big privacy, she emphasised, and there are three things that are critical to privacy: the use of metadata for assessment, the emphasis on social benefits to get consent to the use of data, and lastly, the rewards for privacy.

The third point is important because sources “need to know that the data they’ll be providing is hugely valuable and they should be rewarded, either financially or at least with the knowledge that their data is being respected and that very strong security is being put in place to protect their information,” said Hossack.

Who will benefit from big data?

“Those benefiting most should be the public and patient groups who will have services delivered that are the most effective and safe,” Stanley said, “and the service providers who can be guided by the best unbiased data.”

Brown said, “I think everyone will benefit once the kinks are ironed out. With anything new there is going to be some hurdles, new laws and policies, and considerations.

“From a healthcare standpoint, the benefit will be early intervention, better patient outcomes and more efficient services.”

He pointed out, to get the benefit and the value out of the new technology, organisations need to understand the governance, quality, and skills requirements around this. “It’s not a proverbial silver bullet but is an incredible enabler for healthcare and biomedical research,” he said.

For Hossack, all sectors of the community will gain from the use of big data, as long as everyone is well-educated on how it is going to be used.

“It’s not just health obviously,” she said, but other sectors and industries too which can have so much more information for decision-making.

Provided there are appropriate frameworks put around big data said Hossack, everyone will be a winner.

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