Updated: Feb 7
When the COVID-19 pandemic hit, one of the first things that scientists, industry and governments realized was that many of the “big systems” they had been using – health care systems, innovation systems, governance systems - are not only inefficient but also ineffective. The response to a health crisis like a pandemic, or to a crisis of health as with rare diseases, is to work together quickly. However, even if working together was possible, working quickly may not be. Big systems should be leveraging big data and when the power of big data fails to be harnessed, big failures happen.
With big failures, however, there can be big lessons.
A recent QUOI media article considers a 2021 report by the expert advisory group for the Pan-Canadian Health Data Strategy and speaks about the harms of data gaps in the Canadian health care system, seen acutely with the Covid-19 pandemic but data gaps have been barriers in specific areas of biomedical research such as in rare disease research and development. In the article, the authors regale of a utopic person-centered health care system that is designed and informed by us - the users. That said, the authors worry that we struggle to exist in a provider-centric reality; instead we are ruled by siloed and guarded data pools limiting breakthrough diagnostics and treatment opportunities. The article also talks about the need for coherent evidence-informed data analysis, so that at any time - but especially in a crisis - information and advice can be shared quickly and proactively. The authors also speak of our trust in governments, and of governments’ trust in us, and of the capacity to formulate responsive policy and responsible governing.
The QUOI article makes a great point that a provider-centric health care system is creating problems in our ability to make the most of the data we are collecting as we try to get as close as possible to health care utopia in Canada. However, to long-time analysts of the health data gap there are a few big concerns that first need to be addressed in order to satisfactorily leverage any use of big data, which include:
mismatched incentives invested in research productivity,
a fragmentation of health-related data sets,
our health innovation system’s ineffective capacity to at once provide social benefit and create wealth,
and the lack of forward-looking policy designed to ensure cooperation and prevent misuse among health data providers and users.
It is widely understood by clinical care communities and health authorities that we need to identify better ways of using scientific and health-related data once we have it and that policies about the use of this information is important to that understanding.
Federated data systems (i.e., systems which map multiple autonomous databases into a single geographically-decentralized database) offer a big opportunity to address some of these big concerns.
Federated data systems are nothing new to the likes of Amazon, Uber, and Airbnb. Technological innovations and increased online connectivity have revolutionized the platform economy in these businesses. In the sectors of health research and care, the platform economy is increasingly revolutionizing the way we think about how to diagnose, treat and cure disease. To address the need to reframe the approach to rare disease research and care more specifically, the World Economic Forum produced several white papers (Federated Data Systems, Sharing Sensitive Health Data, Global Data Access) characterizing and evaluating federated data systems as a best-fit solution for the challenges inherent in rare disease diagnostic and treatment plans. The value propositions and benefits associated with these systems for the rare disease space, which include patient care and clinical workflow, are described by the organization as resulting from an approach that allows for both local autonomy over data governance and networked global innovation at scale. Because federated sharing can allow for instantaneous access to datasets built on trusted partnerships, these systems are in a good position to knock down the data silos that are undermining drug and technology development and deployment that continue to fail rare disease patients, which are exactly the kinds of initiatives we are interested as instances of “social pharmaceutical innovation”. Federated data systems are also powerful in their ability to leverage openness - openness in science partnerships and in innovation – which can lead to more efficient and effective data sharing to unlock better outcomes through big systems of health, innovation, and governance.
There are few greater examples for the need to share data like this than in the rare disease space, where treatment is not one option among many, but likely the only option among the few available. In a space where siloed databases also do not have the robust data collection to generate scalable solutions to benefit an underserved patient population, using federated data systems can be game changing or in the case of rare disease research and care - life changing. Rare disease researchers in Canada are currently using federated data systems to mobilize siloed data and to undertake and negotiate novel ways in which to conduct research, development and deploy interventions into rare diseases. The broader implications of moving beyond the high price tags for drugs and uncertainty surrounding the sharing of genomic data in rare disease research is to have a working blueprint for the equitable delivery of health care. Seen in this light, there are fewer big lessons to be learned these days by Canadian researchers, firms, and policymakers than to know when and how to together seize an opportunity of going big with big data.
Gold ER, “The fall of the innovation empire and the possible rise through open science” (2021) 50 Research Policy 5.
Granados Moreno P, “Open science precision medicine in Canada: points to consider” (2018) 4 FACETS 1.
Joly Y et al., “Open science and community norms: data retention and publication moratoria policies in genomics projects” (2012) 12(2) Med. Law Intl. 92.
McGrail K, Maybee A, “How Canada’s health “data gap” harms everyone”, QUOI, 04 January 2022, online: <https://quoimedia.com/how-canadas-health-data-gap-harms-everyone/>.
Written by: Vanessa Scanga (PhD candidate)
Please share your thoughts in the comment section below and check out our discussion forum as well: https://www.socialpharmaceuticalinnovation.org/forum