How the data you share online is shaping the future of our health

Analysis of Google searches and of vast amounts of statistics are helping to uncover new medical treatments and ways to improve health.

By Sarah Marinos
Big data. It's a term you may have heard thrown around, but what exactly is it? And how could it be making a difference to our health now and a few years into the future?
Big data is the broad name given to massive and complex sets of detailed statistics and information.
From a health perspective, that data might be hospital admission numbers, the number of people diagnosed with a certain disease, or the number of times people do a Google search for a specific symptom they are worried about.
However big data is collected and whatever shape it takes, experts believe it promises to be a gamechanger in healthcare.
It has the potential to improve and streamline healthcare systems and to help find ways to better prevent, diagnose, treat and cure disease.
"Big data has enormous potential and offers enormous community benefit," says Professor Sallie Pearson of the Centre for Big Data Research in Health at the University of New South Wales.
"We need to harness this data and use it for the public good."
Image: Getty

Patients like you

In the US, entrepreneurs Ben and Jamie Heywood are already harnessing the promise of big data.
They started PatientsLikeMe – the "world's largest personalised health network".
It has 600,000 members who use the network to report and share their experiences of some 2800 different medical conditions.
Since it began, PatientsLikeMe has generated more than 43 million pieces of data about different diseases.
It uses advanced mathematical techniques to analyse and finetune this data to help expand experts' knowledge of diseases and to explore current and new treatments.
Ultimately, PatientsLikeMe aims to improve healthcare and so lead to better outcomes for patients.
People can use the network and the information provided by other members to find answers to their own health questions and to track their progress, symptoms and treatments.
In 2018, PatientsLikeMe used data from members to find out more about their healthcare experiences and what they regard as 'good' care.
The research found patients living with fibromyalgia, post-traumatic stress disorder and major depressive disorder are least satisfied with their healthcare, while people with amyotrophic lateral sclerosis (ALS), multiple sclerosis and Parkinson's disease are most satisfied.
The results flag that people with certain health issues may need greater support.
The big data also gives insights into the factors that patients believe are important in 'good' care. These include having a healthcare provider who fully explains treatment options and believing they are receiving the best possible healthcare for their condition.

Big data helps focus diagnoses

Isaac Kohane, a computer scientist and medical researcher at Harvard, is also pushing the boundaries of big data.
He wants to organise and collect the health information of as many people as possible, so doctors can then search that data to find the 'doppelganger' of a patient sitting before them.
Once that doppelganger is located, doctors can look at what successful treatments they may have been given, the outcome of that treatment, what didn't work as well and any symptoms or reactions they experienced.
That information could be used to develop more personalised and focused diagnoses and treatments, believes Isaac.
He argues that the datasets that doctors currently use to diagnose an illness are small – often based on the people they have treated themselves or what they have read in academic papers and medical journals.
Much bigger datasets of patients' health information would offer greater insights and, potentially, better treatments.
"If someone suffers depression or ADHD, there are great variations within those illnesses," says Seth Stephens-Davidowitz, a former Google data analyst who has spent years studying big data.
He is also the author of Everybody Lies: What the Internet Can Tell Us About Who We Really Are.
"Some people with depression sleep all the time, some people can't sleep, some people eat a lot, some people don't eat much at all," Seth says.
"There are different types of depression and the treatment that works for you may depend on the variant you have.
"If you can find your doppelganger – the patients who are most similar to you on many levels and who have the same health history and similar symptoms, you can see what has worked for them."
Image: Shutterstock

Data mining has produced real world results

Other major projects at the Centre for Big Data Research so far include a study that shows new generation hepatitis C drugs appear to be working and have led to a drop in the number of deaths from liver failure. This has important treatment implications for anyone diagnosed with the disease.
"I work in the medicines policy area and, at the moment, there is a lot of concern about the use of pain medications," says Professor Pearson.
"With the National Drug and Alcohol Research Centre, we are tracking real world use and the outcomes associated with the use of opioids.
"Formulations have changed so these drugs can no longer be crushed to be injected, and we are tracking that in our data to see if this has an impact on use."

Maybe you can trust Dr Google

Seth says internet searches can also show how big data plays a role in improving health.
"Researchers at Columbia University and Microsoft found you can frequently diagnose someone with pancreatic cancer based on the symptoms they search online," he says.
"Microsoft tracked data from tens of thousands of anonymous users of Bing, Microsoft's search engine, and coded those given a diagnosis of pancreatic cancer.
"They then looked at the group's searches for various health symptoms and found subtle patterns.
"If someone searched 'indigestion' followed by 'abdominal pain', that was a risk factor for getting a diagnosis of pancreatic cancer within a short time.
"But if someone searched 'indigestion' or 'abdominal pain' alone, that wasn't a risk factor for the cancer," continues Seth.
"Searching for 'back pain' then 'yellowing skin' also turned out to be a sign of pancreatic cancer; searching for back pain alone wasn't.
"It's about using people's internet behaviours to potentially inform them of a disease they might have.
"Pancreatic cancer has a low five-year survival rate, but early detection can double a patient's chances," Seth adds.
Image: Getty

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