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Shaneel Pathak’s story is not unique. For five years, while his wife Heing Taing underwent treatment for stage-four lung cancer, he could often be found at Calgary’s Tom Baker Cancer Centre carting around binders of his wife’s medical information. Pathak says many patients and their families are doing the same in an attempt to bridge an information gap in the health-care system between patient and provider.

“When my wife was going through treatment, we quickly realized we were in the midst of a fragmented system,” says Pathak. “We became the hub of a considerable amount of health information that we carried from appointment to appointment, year after year.”

Taing died from cancer in November 2017 at the age of 41. Pathak will share her story, and talk about the power of data in the hands of patients, at a public event hosted by and the on Oct. 3. , will centre around the opportunities presented by Alberta’s rapidly expanding digital health landscape, and collect audience input on how best to access and use digital health information.

“Banking, shopping, education — digital technologies have become engrained in so many aspects of our lives, but we need more critical and constructive conversations about the role that digital health can, and should, have in our individual health journeys,” says Judy Birdsell, conference organizer and IMAGINE chair.

A number of initiatives are focused on advancing digital health in Alberta. This year Alberta Health launched MyHealth Records, a personal health portal that allows Albertans access to some of their personal health information. Alberta Health Services (AHS) is working to implement Connect Care, a digital system intended to bring all of the patient records provided in AHS facilities into one linked digital record.

Startups and smaller companies are in the mix as well. Motivated by his wife’s journey, Pathak founded HAnalytics Solutions, a health analytics company, and is in the final stages of developing an app that will help people collect, organize and store their health information. He says access to this data will empower patients to make informed decisions, and put them on the road to becoming equal partners in their care.

While all of this may be a step in the right direction, Birdsell cautions that there is still work needed on the development side, as well as input from the public, to get to a place where health information is readily available and usable.

The event will take place at the ����ɫ�� Red and White Club and will feature patients, health-care providers and digital health specialists such as keynote speaker Larry Sylvestre. He is president of X-Tend Consulting and an expert in how greater information sharing can enable the potential of artificial intelligence and other technologies to transform both health care and the patient journey.

Dr. Ewan Affleck, MD, a physician and health information specialist, implemented Canada’s most integrated health information system in the Northwest Territories. By examining specific clinical cases, he will illustrate how poorly designed health information systems are having a negative impact on patient and provider welfare.

Bringing the health care system into the digital age

A patient’s health record may be the only connecting thread between all of his or her interactions in the very complicated landscape that is the health-care system, says Dr. William Ghali, MD, O’Brien Institute scientific director. 

“Health care is really complicated and it is complicated because our care generates an incredible amount of data that doctors, nurses, pharmacists, and ultimately patients need to access readily and easily to advance their health,” he says.

Despite the fact that patients today have more opportunities than ever to access their health data, many still go without accessing their information, something Birdsell hopes to see change. 

“Being able to access health data leads to better care and enables shared decision-making between patients and providers,” she says. “If I can travel along my health journey with a complete, accurate, easy-to-access digital health record then I, and whatever caregiver I am seeing, will have access to all relevant information where and when we need it.”

See the full agenda and register for Partners in the Power of Information Sharing .

William Ghali is a professor in the departments of Medicine and Community Health Sciences and scientific director of the O’Brien Institute for Public Health and a member of the Libin Cardiovascular Institute of Alberta.

IMAGINE is an independent group that welcomes all Alberta citizens to work toward a health-care system that delivers the best possible experiences and results for Alberta’s patients and families. Alberta’s health-care system belongs to all of us – the citizens who live, work and raise families in this beautiful province. Yet we have little ability to influence how the system operates. IMAGINE is working to change that by bringing Albertans’ voices together to improve our health-care system. When citizens come together, they can share their knowledge and experiences to help make our system the best it can be.

The O'Brien Institute for Public Health at the ����ɫ�� supports excellence in population health and health services research, realizing the benefits of such research by informing community, policy and health-practice stakeholders. The institute's membership includes more than 500 multidisciplinary researchers from 13 Cumming School of Medicine departments and nine other ����ɫ�� faculties, such as Nursing, Veterinary Medicine, Kinesiology and Arts; health professionals in Alberta Health Services; and research users and policy-makers from municipal and provincial institutions. As an Institute, we share a vision of "Better health and health care" reflecting our two priority research areas of Improved Population Health and Enhanced Health Systems Performance.