We live in an age of personalization. Every day we use technology — such as search engines, streaming music or video services, and online shopping — which identify patterns in our behaviour, and those of millions of other people, to predict what we may want in the future. This personalization is driven by data.

The power of meaningful data has had a profound impact on how we experience the world around us. And while this technology has disrupted countless industries, we are just beginning to scratch the surface in healthcare.

We are at a pivotal moment in healthcare history. Advances in science and technology are fueling discovery at a rapid pace. An unprecedented convergence of medical knowledge, technology and data science is revolutionizing patient care. Our greater understanding of genomics, Big Data, and the untapped insights sitting within digital health records are shifting the boundaries of what is, and what will be possible in medical research and the quest to improve patient care.

Today’s Treatment Paradigm

As in other industries, the solution to personalizing healthcare is data. The healthcare industry creates mountains of data — electronic medical records in hospitals and clinics, clinical trials and research, genomic and molecular information from next-generation sequencing, and even data from wearable devices and mobile apps. But it’s not as simple as just collecting a large volume of data. While Canadian researchers, businesses, and hospitals collect and maintain a large amount of high-quality data, the ability to draw insights from those data is limited because this information is not accessible or shared between different organizations and institutions, nor across provincial boundaries.

Currently these data are siloed and need to be harmonized, or brought together in a way that ensures quality and standardization so the data sets can be mined for insights. In other words, the data needs to be FAIR —Findable, Accessible, Interoperable and Reusable. We also have to make sure these data are appropriately de-identified or anonymized to protect patient privacy.

As Michael Duong, our Personalized Healthcare Lead explains, “Not having data is not the issue. We have an abundance of it. But in order for us to leverage these data, we first need to organize it so that we can easily access it without a lot of manual processing and curation. This is not easily achieved because of our existing data infrastructure. Take for example, electronic health records in Canadian hospitals and clinics. We’ve created systems that don't speak to one another. The data are incredibly unorganized and much of the information is entered in shorthand and in open text fields. The systems are different from one hospital to another. So how do you analyze data as a collective pool when it’s collected and stored in different places, using different languages, and different file formats? These challenges are inherent and finding a solution could transform healthcare in Canada and around the world.”

The Future of Personalized Healthcare

Depending on who you ask, the future of personalized healthcare can mean many different things, but the unifying theme is that it will be about how we collect and use data. By integrating data from all available sources and analyzing it, we can finally get a complete picture of an individual’s medical profile and define a truly personalized approach to care.

To bring this paradigm to life, the whole healthcare system – from the way we develop therapies to the way care is delivered to patients – has to evolve and modernize to accommodate this new kind of patient data and make it accessible to all stakeholders accountable for the care of Canadians. This is a large-scale transformation that can’t be solved by one company, institution, or government alone.

In partnership with stakeholders across the healthcare system, we are creating Canada's first digitized interconnected and patient-centred health data network — the Canadian Personalized Healthcare Innovation Network (CPHIN). This federally incorporated not-for-profit entity aims to make health data findable and accessible, ultimately helping patients tailor their own health decisions in partnership with physicians.

The vision of the CPHIN Integrated Data Network (IDN) is to provide a search engine that can access real-time data streams while maintaining patient privacy.  With real-time access to data and insights, the platform will foster informed decisions in every facet of healthcare, hopefully, accelerating innovation, improving efficiency, lowering costs, speeding up approval processes, and improving patient care. When completed, the IDN will be Canada’s most comprehensive health query network accessible to clinicians, researchers, the private sector, and all Canadian patients through their healthcare provider. As data from source institutions will be held in secure staging areas at individual sites, CPHIN’s platform will be able to send queries to each staging area. This will allow CPHIN’s users to access data without requiring that it be hosted it in one central location. Patient privacy and data security is at the core of the IDN’s design.

By reducing barriers to information between institutions and health systems, Canadians and stakeholders across the healthcare system will benefit:

  • Patients: more equitable and higher-quality care informed by the latest real-world evidence. These data and insights are especially beneficial for Canadians in remote and isolated communities, who are often forced to travel long distances to receive quality care.
  • Clinicians: better tailor their approach for patients, as treatments are aligned with the genomic makeup and individual characteristics of patients, and learn from the experiences and outcomes of patients with similar profiles.
  • Researchers: access a range of rich, robust, and validated data, reducing the need for data collection and repetitive research, saving time and money, and allowing more research to be done.
  • Governments: make more effective decisions about where to put healthcare resources based on real-world evidence that extends far beyond clinical research, improving healthcare system sustainability.
  • Startups: receive funding and resources to further develop their innovations, build expertise, tap into new partners and partnership opportunities, as well as grow and scale their company.
  • Private sector: transform research and development for products across the spectrum of care, to optimize and maximize outcomes for patients.
  • Canada: increased economic development by further building expertise in personalized healthcare and data, bringing greater R&D investment, and making Canada a more attractive jurisdiction for life sciences businesses and professionals.

CPHIN’s diverse pan-Canadian partners inform the Network’s consideration of a wide range of challenges and reinforce its reach across Canada. Founded by the Canadian Cancer Trials Group, Roche Canada, Canada’s Genomics Enterprise, and the University of Waterloo, CPHIN’s partnership has since grown to include a collection of biopharmaceutical, technology and data management companies, and other organizations and institutions committed to transforming healthcare in Canada. While Canadian and international private sector organizations will pay for access to the Network, the public sector, including researchers, hospitals, institutions, payers, governments and clinicians, will be able to access the data from the data platform free of charge.

Roche has long been a leader in the field of personalized medicine. We pioneered the use of companion diagnostics for our cancer medicines, which now commonly inform treatment decisions. But that is only the beginning. Now we are spearheading the next generation of healthcare with partners to transform the Canadian healthcare system and accelerate access of health technologies for patients, while ensuring a sustainable health system and driving economic growth for the country. Personalized healthcare is not only about treating and even preventing disease for individual patients — it’s also about rethinking the healthcare system for future generations.

April 29, 2019

 

Previous In Focus posts