Canada needs a comprehensive health information strategy

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"...The Internet tends to push everything toward a self-service model. It happened in retail, banking, government services, and of course libraries. If you've worked in or used libraries for more than twenty years, try to think of all the things patrons once needed personal assistance with but which is now self-service. For example, librarians once mediated the searching of bibliographic databases on behalf of patrons, but since the advent of institutional licensing and IP-based authentication, today's users jump right in and (for better or worse) do all their own searching." — Hutchison, 2013

  • The purpose of an information strategy is to highlight the extent to which a modern, complex organization depends on information, in all of its guises, and to consider how this strategic asset should be managed.
  • This has always been true in medicine, back to the days of Hippocrates and later Galen
  • as the complexity of the web has increased and opportunities to share information have multiplied, the notion of information management has emerged as both a discipline and an important tool in medicine, and lies at the very heart of health care ~ but Canada does not have a coherent information strategy
  • Today's technology is intrusive, overbearing. It leaves us with "no moments of silence," with less time of our own, with a sense of diminished control of our lives. But all this can change. Now we are trapped in a world created by technologists for technologists. We have even been told that "being digital" is a virtue. It isn't: people are analog, not digital; biological, not mechanical. It is time for a human-centered technology, a humane technology.
  • Computers don't think like doctors do; don't seem to mirror how doctors are educated and trained
  • Searching has become the most frustrating technology - ever. A medical index is actually an infrastructure and it should literally point to knowledge quietly and unobtrusively. Yet it is all too visible, all too demanding. It controls our destiny, if you will, in the clinic, in the lab and in the clinical trial.
  • information silos keep information separate and inaccessible; data privacy and preservation are also concerns
  • http://www.nerc.ac.uk/research/sites/data/sis.asp
  • The NERC Science Information Strategy (SIS) has been created to provide the framework for NERC to work more closely and effectively with its scientific communities, both internal and external, in delivering data and information management services to support its five year science; providing simple coordinated access to NERC's data and information assets; ensuring data is open and accessible to the whole community and that the conditions of use are clear and transparent; identifying data of long term significance; implementing stakeholders common policies, process and guidance for all stages of the data curation; common standards to enable integrated access to data held within data centres and promotion of reuse
  • The process by which data is discovered using tools such as the NERC data discovery service and Google. Discovery of raw data files is of very limited use; instead the items found are metadata records designed define and describe data sets. A data set catalogue is a searchable system of metadata records....addresses how the management of analogue data and physical samples, and the work of libraries and archives integrates with the principles and practices for digital data.
  • The British Library will continue to play a major role in the management and dissemination of research information, and will move to clarify and understand the role of libraries in the management and dissemination of research data
  • ...the Canadian Digital Information Strategy ...proposes strengthening content, ensuring its preservation, and maximizing its access and use...important for many reasons the report addresses regarding culture; the report has some anchors in industry, stating that “nations that nurture their digital information assets and infrastructure will prosper...“Digital content will be more and more in the form of conversations between people, using many different media types.””

Key citations

  • Dart JM, Gallois C. Community desires for an online health information strategy. Aust Health Rev. 2010 Nov;34(4):467-76.
  • ...Different communities have different information demands but there is a strong demand for information which empowers community members to take control of their own health and become active participants in their health care. Tools such as a community health portal and patient clinical pathways should become more available..."
  • Carlyle R, Grant MJ. The power of information: health information and UK agendas. Health Info Libr J. 2012 Dec;29(4):257-9.
  • Clinical librarians and health information specialists are well placed to help their health and social care colleagues to develop information-related skills. Librarians and information specialists need to shape the local agenda for health information, by framing national policies in ways that draw attention to support and information-related skills. If they do not do so, there is a risk that colleagues will read the strategy in England as only being about digital access to health records and data.
  • Hannah KJ. Transforming information: data management support of health care reorganization. J Am Med Inform Assoc. 1995 May-Jun;2(3):147-55.
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