Guest Blog: Maximizing Health Research Data Benefits in Public Health Emergencies: A Canadian Institutes of Health Research (CIHR) Perspective
Written in collaboration by CIHR’s Science Strategies and Initiatives Branch, the CIHR Institute of Infection and Immunity, and the CIHR Institute of Population and Public Health
Sharing information quickly and effectively during a public health emergency (PHE) can save lives. Yet the need for timely data access must be balanced with a range of ethical, legal and social considerations.
The spread of the Zika virus has focused global attention on the importance of rapid, coordinated responses to PHEs. To this end, health research and emergency response organizations around the world are exploring new approaches that can better enable knowledge sharing in order to maximize collective benefit, and ultimately, to save lives. Here in Canada, the Canadian Institutes of Health Research (CIHR) is actively collaborating with national and international partners to fund research on Zika and inform new approaches to data sharing in PHEs.
Who is CIHR?
CIHR is Canada’s health research investment agency. We are composed of 13 virtual Institutes, each dedicated to a specific area of focus. Our mission is to create new scientific knowledge and to enable its application for improved health, more effective health services and products, and a strengthened Canadian health care system. We achieve this mission in a number of different ways, including the development of funding opportunities, partnerships, policies, and engagement activities.
Our mandate also has a global health component. We are committed to addressing emerging health threats, wherever they may arise. We are equally dedicated to bringing about improvements in health on an international scale. This is achieved in part by providing support for Canadian researchers to collaborate with researchers and decision-makers in low- and middle-income countries to solve pressing global health problems. By working with partners to meet these commitments, we are playing a key leadership role in Canada’s efforts to respond effectively to PHEs and thus save lives.
The CIHR Institute of Population and Public Health (IPPH) supports research and its application aimed at improving the health of individuals, communities and global populations and promoting equity in health. Other CIHR Institutes also fund research in relevant public health areas. For example, the CIHR Institute of Infection and Immunity (III) invests in research on infectious diseases and the body’s immune system. Through this research, III addresses a wide range of health concerns related to infection and immunity, including disease prevention and treatment, as well as public health promotion. Therefore, III is engaged in public health activities related to infectious diseases and associated preparedness research.
How are we engaging in the data revolution?
CIHR recognizes that the global “data revolution” is having a profound impact on health research. As the volume, flow and complexity of health research and health-related data increases, so does the number of challenges and opportunities associated with their use. Increasingly, data is recognized as a valuable output of research, and existing data is seen as an important input into new research and decision making. The potential of the data revolution to improve health care is further amplified by the rapid development of technologies, tools and processes that impact our digital culture and play an expanding role in our daily lives.
As a publicly funded organization, CIHR believes that the results of the research we fund, including data, should be as openly accessible as possible. Access to research data helps researchers ask new questions, try different methods, purposefully reproduce findings and collaborate across boundaries.
As a research funder, we recognize our role in contributing to these benefits. Our responsibilities involve developing policies and requirements for responsible data management (such as the need to ensure the privacy of findings from research involving humans); implementing ways to recognize data as an important research output; and promoting excellence in data management.
Our strategic plan includes a commitment to embrace the data revolution by harnessing the power of technologies and advancing data-intensive research. To focus our efforts, we developed the CIHR Health Research and Health-Related Data Framework. The Framework targets four key areas:
- fostering a collective digital culture
- expanding required data-related resources
- supporting relevant data-related skills
- enabling data access, linkage, use and reuse
We also recognize that our ability to make a difference depends on strong relationships with other stakeholders in the data ecosystem. We are therefore working closely with partners to promote and enable data-intensive research as well as data management.
What are we doing to enable data management?
CIHR already requires and encourages grantees to undertake practices related to data management.
For example, the Tri-Agency Open Access Policy on Publications (2015) states that CIHR grant recipients must deposit certain types of data into a public database immediately upon publication of results.
The Tri-Agency Statement on Digital Data Management (2016) outlines our expectations related to digital data management. This statement recommends that data resulting from agency funding should be preserved in a publicly accessible, secure and curated repository or platform. Researchers are also asked to consider whether there are any ethical, legal or commercial obligations that must be taken into consideration prior to making data accessible.
We are also a signatory on two international joint statements led by the Wellcome Trust promoting the need for data sharing in public health. Sharing Research Data to Improve Public Health (2011) is a broad commitment to increase the availability of public health research data. The subsequent Statement on Data Sharing in Public Health Emergencies (2016), prompted by the Zika outbreak, calls for all research data collected during PHEs to be made publically available as quickly and openly as possible.
Over recent years, CIHR has made significant investments to support Initiatives with data-related objectives. To implement the Statement on Digital Data Management, we are also starting to incorporate requirements for data management plans into strategic funding opportunities.
A relevant example of how we’re enabling data management can be seen in our funding response to the Zika virus outbreak.
What is the Zika virus and how did the current epidemic unfold?
The current Zika epidemic is an ongoing PHE that has drawn significant international attention and concern.
The Zika virus is a mosquito-borne virus, related to other pathogenic viruses such as Dengue, yellow fever and West Nile. Although the virus was identified almost 70 years ago in Africa, it did not gain international attention until late 2015 when a significant outbreak took place in Brazil and subsequently spread to surrounding countries.
The virus was previously not of grave concern as most humans are asymptomatic when infected or have mild symptoms. However, during the current outbreak a relationship was seen between the virus and the birth of babies with smaller heads (microcephaly) and the rare development of neurological complications in adults. In February 2016, the World Health Organization (WHO) declared the Zika virus outbreak a PHE of International Concern.
While Zika has not yet been found in Canada, mosquitos carrying the virus have recently been identified in the United States. There is also potential for local spread of the virus through Canadians having sex with infected partners or traveling to affected countries.
How are we involved in responding to the Zika epidemic?
Given our engagement in research on global health and emerging threats, CIHR was able to respond quickly to the PHE declaration.
In the spring of 2015 we launched a funding opportunity in partnership with the International Development Research Centre (IDRC) for a Canada-Latin America and Caribbean Zika Virus Research Program. This funding opportunity is contributing to the global PHE response by encouraging increased collaboration between Canadian and Latin American/Caribbean teams, and the sharing of knowledge with other international research groups working in this area.
The CIHR-IDRC funding opportunity required that teams include at least one member with expertise in data management and responsible data sharing. Applicants were also asked to provide a data management plan, outlining how the data collected would be managed and shared both among the team and with international collaborators. Finally, as a condition of funding, applicants were notified that they should be prepared to share quality-assured interim and final data as rapidly and widely as possible, including with public health and research communities and the WHO.
Three collaborative teams have now been funded in the areas of diagnostics, pathogenesis and vector studies.
How are we collaborating internationally to support data management in PHEs?
One way that CIHR is collaborating to advance international data access and sharing is through our involvement with the Global Research Collaboration for Infectious Disease Preparedness (GloPID-R). GloPID-R is a network of research funding organizations that have come together to facilitate an effective research response to new or re-emerging infectious disease outbreaks with pandemic potential. To date GloPID-R is comprised of the WHO and 25 funder members, including CIHR and IDRC. CIHR is represented at the GloPID-R table by Dr. Marc Ouellette, the Scientific Director of III.
In November 2016, CIHR is co-organizing a workshop in Brazil to promote and establish collaborations between Zika projects funded by GloPID-R members. This workshop will feature broad discussions related to the sharing of both research data and biological samples.
To further its mission, GloPID-R has set up several working groups, one of which is focused on data sharing. The first activity of the Data Sharing Working Group was to develop a framework for data sharing in PHEs, including defining the types of data of interest and laying out an action plan. The group has started a mapping exercise to understand what work has been completed or is underway to avoid unnecessary duplication. They are also preparing case studies on data sharing related to past PHEs (with different disease types and locations), highlighting unique elements and lessons learned.
CIHR’s engagement in the working group has been centered on the development of core principles for data sharing in PHEs, with a focus on how this differs from traditional public health research. Some elements being given special consideration relate to balancing access and privacy, quality and timeliness, and equity and intellectual property. Questions being raised include:
- When time is of the essence, are patients in PHEs more willing to let their data be made fully accessible (in the hopes it will lead to life-saving discoveries), even if this means their identities could be revealed?
- Is compromising slightly on data quality (‘good enough’ instead of ‘excellent’) worth the trade-off to enable more timely access to data?
- How can data be freely and equitably shared (i.e., not disadvantage countries, organizations or individuals with less funding), given the cost of data management and the potential commercial value of some PHE research?
Once finalized, these guiding principles will be available on the GloPID-R and CIHR websites.
This working group is an example of how CIHR is working effectively with international partners to further shared data-related priorities and maximize the collective potential of research investments.
Where can I find more information?
We are committed to ongoing work with our stakeholders to inform policies, develop resources, and fund initiatives to harness the benefits of the data revolution. For further information on CIHR’s current activities related to data management and data-intensive research, please visit our Health Research Data webpages or contact us at firstname.lastname@example.org.
To learn more about CIHR, the Zika virus and data sharing, please register here to join our webinar on December 8th at 2pm EST.
 As per the World Health Organization (WHO), a PHE is “an occurrence or imminent threat of an illness or health condition, caused by bio terrorism, epidemic or pandemic disease, or (a) novel and highly fatal infectious agent or biological toxin, that poses a substantial risk of a significant number of human fatalities or incidents or permanent or long-term disability.”