Speaking earlier this year, Maxine Mackintosh, a data scientist, researcher and co-founder of HealthTech Women UK explained to the BCS why she believes public support for sharing data needs to be ensured to create a healthcare system that is designed to keep people healthy rather than making them better.
"Data saves lives, it may not be as direct or as dramatic as the operating table or in A&E...........but when the next thalidomide happens, how long will it take to work out where the problem lies? If health data is liberated and can be analysed by the best minds and machines, warning signs could be spotted before they become a full blown crisis. Your data can really save your friend, family or neighbour's lives and that needs communicating. Articulating such success stories is hugely important of in demonstrating the benefits and winning public trust around the effective analysis of health data."
The sharing and analysis of health care data for population health management has been tried before. Care.data was an ambitious plan initiated in 2014 to create a vast database to hold the health records of everyone in Britain. However, a badly designed PR campaign left many people unaware of the purpose and benefits of Care.data, their mission only coming to light amid headlines of the risks of hacks and data losses, leaving the public understandably wary of sharing their health data.
Now DeepMind, an artificial intelligence and research platform is to attempt the process again, it is designed to make scientific breakthroughs in complex sphere's such as healthcare, yet Maxine is aware that basic public understanding and trust needs to be built.
There are, she explains, three big benefits for health, firstly there's the potential sources for data, everything from medical records, to wearables , to your internet activity data.
" We can draw all those sources together and start to paint a really accurate picture of people's health, before they get sick. It creates a much fuller picture for disease prevention. Secondly, data will let us rethink systems. You can understand a story by looking at how data flows, by looking at what is happening across a health system. That lets us for example, allocate resources better and see where the inefficiencies lie."
Finally she explains that big data lets us ask different questions. Previously health researchers carried out traditional epidemiological studies, work that involves the analysis of patterns, causes and effects.
"Now, we can use novel approaches, including machine learning. We can use hypothesis free methods and let the data speak for itself."
It is certainly an emotive subject and people are understandably nervous about sharing their personal data. It could however, achieve so much in the healthcare sector, awareness raising is key.
Article courtesy of the BCS, ITNow magazine, read the full article here: