Monday, November 4, 2013

People Power – how patients can use their own data to advance medical research

Kevin McCormack is blogging this week from the Partnering for Cures meeting in New York.

Jesse Dylan and Erik Perakslis speaking about the value of big data at Partnering for Cures
If Big Science was the theme that started the Partnering for Cures conference in New York City –– then Big Data was the mantra that seemed to dominate the rest of the morning. And that could be good news for patients and patient advocates.

By Big Data I mean the collecting of massive amounts of health information from millions of people, using readily available technology, to create a vast resource for research. The collection wouldn’t come the way it does today, through visits to doctor’s offices, instead it would come from individual’s themselves, uploading their medical records, or from devices they are wearing that monitor their blood pressure and blood glucose etc. It’s a new way of thinking about health data, and a new way of thinking about health.

For example, Eric Perakslis - Executive Director for Biomedical Informatics & Countway Library of Medicine at Harvard Medical School – and Jesse Dylan – the founder of Lybba, a non-profit devoted to the benefits of community, data and technology in healthcare (and also the son of Bob Dylan) - are champions of what they call “People Powered Medicine”. This is a computer cloud-based repository where anyone, sick or well, can donate their health data, which is then made available to any researcher who is interested.

During a session on big data, Dylan said:
“Building the open science commons that everyone has been talking about, a place where people can share information safely and anonymously and that will ultimately lead to better health outcomes for everyone.”
Professor Jeffrey Olgin from the University of California, San Francisco, picked up on that theme when he spoke about the Health eHeart study. His goal, in conjunction with the American Heart Association, is to use the power of the internet, mobile apps, sensors and links to electronic medical records etc. to collect real-life and real-time data on one million Americans.

Olgin quoted a study by Morgan Stanley that showed 91% of smartphone users keep their phone within 3 feet of them 24 hours a day. He said this creates tremendous potential to use the phone to collect information from a variety of sensors linked to the body (such as watches that can measure blood pressure) and transmit that information in real time.

The hope is that by collecting that much information on that many people it will dramatically increase our ability to understand how the different risk factors for heart disease interact with each other, identify better ways of spotting those at most urgent risk and hopefully, come up with better ways of managing that risk.

Linda Avey, the Co-Founder and CEO of Curious Inc. – a company that is creating a new platform for gathering, exploring and sharing personal data – says this kind of information can also be personalized to better suit the needs of patients, and to give us insights into problems we hadn’t thought about before.

Curious Inc. for example allows patients to decide if they want to track and measure not just the usual things like blood pressure but also less obvious things like attributing a score to fatigue or intensity of pain etc. Avey says this gives patients a much greater sense of control over the data they collect, and a greater awareness of all the different aspects of their condition.

She says it can also be useful for researchers. Recently for example they saw a correlation between headaches and the temperature and CO2 levels in the house of one patient. They eventually determined that during the summer the patient closed all the windows and cranked up the air conditioning. While the temperature in the house stayed constant, the CO2 levels rose, causing headaches and making the person feel sleepy.

Avey says if that person had been taking a new or experimental medication they might have linked those feelings to the drug, instead of understanding that they were caused by other factors.

“We do double blind studies,” she says, “but we don’t always know what we are blinding ourselves to.”

Knowing all the factors that can influence how a person feels, and how they interact is critical for researchers trying to carry out clinical trials of new drugs. If a person is experiencing problems we need to know if it’s a side effect of the therapy, or something else. This is even more important when that clinical trial is for an entirely new way of treating patients, such as using stem cells.

That’s why we created our Alpha Stem Cell Clinics initiative, which will create clinics in California where scientists can carry out stem cell clinical trials in a controlled way. And having access to this kind of Big Data can only help researchers make those trials safer.

Kevin McCormack

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