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Ethics & best practices for the access and use of external data

Written ByLesley DyckLesley Dyck | February 28, 2013
Lesley Dyck

Lesley Dyck, BA, MA

Knowledge Translation Specialist

Lesley is a health promotion professional with 12 years of public health experience in British Columbia focused on organizational capacity building for health equity and population health, tobacco reduction and injury prevention. Prior to working in public health she had a diverse career in the NGO sector across Canada in the areas of communication, women’s health, community development, and recreation. Lesley earned her BA in Mass Communication at Carleton University and her MA in Health Promotion at the University of British Columbia.

ldyck@stfx.ca

What do forests, the immune system and the social determinants of health have in common? 

They are all examples of complex adaptive systems (CAS). This means that they are dynamic networks of many diverse agents that are constantly acting and reacting with each other, and therefore are very difficult to understand.

Instead of using a reductionist approach, which assumes we will understand a system by reducing it into its parts, we can better understand complex systems by embracing the idea of multiple interacting causes.

Complexity science is successfully being applied to many “wicked” issues, including upstream issues like the social determinants of health and health equity.

A recent paper from a team of health promotion researchers and practitioners in Australia provides a theoretical framework for using CAS theory to inform health promotion practice (1). The purpose of this paper is to help practitioners make the shift towards a complexity approach, and to enable those already engaged to communicate the value and meaning of their work. It is definitely worth a read! 

How is this related to health status reporting, issues of ethics, and best practices in accessing and using external data? 

Fundamentally, the field of population health status assessment has been struggling with issues of complexity.  While we now have better information systems with more data, and richer data, our problems and needs have become more complex.  Public health epidemiologists and program directors are struggling with the integration of indicators and methods that adequately capture the social determinants and tell the story of health inequity. Boundaries around privacy and data ownership are certainly being pushed. Practitioners and decision makers are asking for access to primary data from a variety of sources, as well as the development of better data, and access to more timely local data.

The NCCDH Learning Circle on Population Health Status Reporting discussed these issues and more, and reflected on the fact that the population health assessment and surveillance system in Canada is still in the early stages of development and is not yet able to meet the growing complexity of needs.

Ideas for the future included a national conversation about how to support the work of “ethics review boards” around these issues, as well as the development of shared national standards around the use of the Canadian Community Health Survey (CCHS) data.

A synthesis of the July 2012 Learning Circle discussion on ethics and best practices for the access and use of external data is available as part of the Learning Together series.

There is more to come - the Learning Circle’s final topic is about knowledge translation and the methods and tools to support the iterative process of knowledge dissemination and capture. Stay tuned!

 

Reference:

(1) Van Beurden, EK, Kia, AM, Zask, A, Dietrich, U, Rose, L.  Making sense in a complex landscape: how the Cynefin Framework from Complex Adaptive Systems Theory can inform health promotion practice.  Health Promotion International [Internet]. 2011; Advance Access published November 29, 2011. [Cited 2013 January 31]

 

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