Over the next few weeks we’ll be talking about data. Specifically, healthcare data, how we use it and how we can use and share it more effectively for the benefit of everyone who depends on the valuable analysis associated with its democratization.
In this series of posts, we’ll explore the key benefits of a democratized dataset for the various constituencies, some of the policies in practice hindering optimization and sharing of data as well as what technology like Blockchain will mean for the future.
Striking the right balance when sharing research data
Governments and businesses are quickly realizing opening up data is a key strategy to foster transparency, innovation and unlock commercial value inherent within the data. Businesses are finding novel ways of leveraging a combination of open data and proprietary technology to drive efficiency and better utilization of government resources. Consumers benefit through greater access to services that are timely and customized to their needs. Globally, there have been a number of initiatives underway to put data in the hands of researchers, entrepreneurs and other government institutions to bring about change. In 2002, the Danish government opened up access to geographical census data to all citizens and corporations. In 2009, an independent consulting firm determined the direct benefit of making this data available resulted in improved coordination of emergency services, improved commercial usage and saved nearly $62 Million Euros. In the UK, the government opened up procurement data and made it easier to access. This allowed other government entities to identify ways to reduce procurements costs by over 4 million pounds.
In healthcare, the potential usage is expected to introduce a sea change of innovative services, efficiencies and ultimately change the way healthcare systems operate. The Council of Canadian Academies published a paper in 2015 studying the state of access to health and social data for the purpose of research in innovation in Canada. In it, it identified several Canadian examples of how access to data has benefited the population at large.
Improved outcomes in patient health
● Researchers at ICES and Public Health Ontario used survey data that was then tied, at the consent of respondents, to their health records. Results demonstrated clear evidence of unhealthy behaviour had much shorter life expectancies. The data was then used to demonstrate the benefits of interventions addressing key risk factors
Improved Usage of Health System Resources
● British Columbia’s Health System Matrix linked multiple encounters and socio-demographic data to create a summary view of every patient in the system. The resulting conclusion from this single repository of data indicated different health-care needs across different groups of residents. The data was used for strategic planning, care for those with chronic conditions and trajectory for residential care
Improved Patient Safety
● Adverse Drug Reactions were primarily detected through a voluntary system of reporting whereby physicians would report side effects to Health Canada. Since 2011, CIHR has coordinated a distributed network of provincial teams to analyze with a common methodology. Studies from this approach have involved over two million users, something that would have been impossible without the pooling of data.
While the examples above demonstrate the value of sharing data, the paper cites a primary barrier to having greater cross collaboration among healthcare institutions is policies that hinder sharing of clinical data. We’ll discuss those issues in our next post.