Big data has potential to be a health systems innovator

MONTREAL—It took a year for Canada’s public health officials to understand the full extent of the 2009 H1N1 outbreak. The principal problem, then and now, is lack of information. “Big Data” can answer a lot of health questions and can, moving forward, enable Canada’s public health-care system to mount an appropriate response to any potential outbreak. Big Data provides the raw material for individuals, governments, and communities to combine data and social media information on a large scale in order to observe patterns, estimate probabilities and extract new insights. For example, Big Data can track resistance and susceptibility to disease and how fast and where a virus is spreading; it can map vaccination compliance and even predict human behaviour, including travel patterns. Big Data carries both benefits and risks and its critics argue that, among other things, it can to lead to unlimited surveillance, creating fears of Big Brother and possible infringements on personal privacy. Proponents of Big Data insist that the risk is low in relation to the potential for Big Data to become a source of health system innovation in Canada. Big Data has some successes already. In the biomedical sector, researchers mine Big Data to see relationships between genes and diseases in order to better determine which treatments work. In genomic research, the goal is to combine big datasets of personal, demographic, economic and environmental factors, together with clinical data to improve health care. While genomic scientists are building collaborative networks for data sharing, they run into roadblocks when clinical data is restricted under the protective banner of medical confidentiality. Yet access to obtaining individual consent for each use of clinical data is inefficient and leads to a byzantine system of overlapping ethics reviews and access committees, thereby defeating the point of Big Data. The real issue is trust. How do we overcome systemic hurdles to data sharing? This is an urgent question Canada must answer if we aspire to improve patient care and ensure sustainability of our universal health-care system. At a systemic level, Big Data analytics can help pinpoint and understand the real health needs of Canadians. Rather than the current haphazard system that tries to be “everything to everyone,” Big Data is the key to efficient, targeted, economical and ethical health care. It will be instrumental in preventative care, health-care planning and general health promotion. At an individual level, Big Data can help clinicians deliver better, personalized medicine initiatives, especially if linked to standardized electronic medical records. If properly executed, Big Data can actually empower citizens and transform health care by bringing information directly to them so that they can play a more active and interactive role in their own health. In this model, citizens could contribute social determinant data directly online, including exercise and dietary habits, and neighbourhood data, such as public transport or access to fresh produce. Participating in research while giving consent to broad data sharing with proper oversight is not the end goal, but the necessary first step to the productive sharing of health-care data between individuals, health professionals and institutions. Despite the medical and social benefits and low privacy risk, citizen buy-in will hinge on the creation of accredited data safe havens for data security. Such havens must ensure safe linkage between genomic and clinical data and also contribute to health service improvements. The answer lies in the creation of secure, shareable electronic medical records, subject to centralized and streamlined ethics and access approval mechanisms, which would vastly improve patient care and linkage to genomic data. Transparency and harmonization of standards, regulations and policies are the cornerstones of trust that must be in place for this to work. Big Data has the potential to be a health systems innovator. Health-care patients are citizens first, and all citizens are would-be-patients. Solidarity in data sharing can sustain equitable, accessible and affordable health care. Before solidarity can be leveraged, though, an environment of trust in ethical approaches and security protocols must exist for citizens and their health care systems. Then—and only then—will Big Data reinforce the quality, safety and sustainability of our precious and respected health-care system. Bartha Maria Knoppers, Ph.D., O.C., O.Q., presented this commentary to Parliamentarians at a Federation for the Humanities and Social Sciences Big Thinking event on Parliament Hill on Oct. 30, 2014. She is Canada Research Chair in Law and Medicine; director, Centre of Genomics and Policy, McGill University and Genome Quebec Innovation Centre. news@hilltimes.com The Hill Times

Big data has potential to be a health systems innovator

Health-care patients are citizens first, and all citizens are would-be-patients.

Public service job cuts loom as Ottawa misses spending and deficit targets

Conservative MPs bailed on France visit early, won’t say why

Ratna Omidvar on immigration, and eight years of legislating in the Senate

Relaunch advisory group to prepare for Trump’s return, says original NAFTA Council member

Liberal strategists say Trump’s victory will cement Trudeau’s decision to stay

Fixing health system flaws requires better data sharing and workforce strategies, say health-care experts

AI and mental health care: opportunities and oversight

Don’t forget the harms of not sharing health data

Data-sharing issues affect the health-care sector

New health deal needs transparent monitoring and evaluation process to make sure health-care outcomes improve

News

Get free news updates

Opinion

Submit a guest opinion article

resources

Advertise

subscribe

get help

Get free news updates

Submit a guest opinion article

Big data has potential to be a health systems innovator

Health-care patients are citizens first, and all citizens are would-be-patients.

Become a Political Insider