2.5 Data Dissemination

One important aspect of the implementation process for a congenital anomalies surveillance programme, other than the collection and analysis of the surveillance data, is to plan in advance the way the information generated will be disseminated. Part of this advance planning involves identification of the processes by which documents (e.g. statistical reports and annual reports) are tailored to the different potential audiences who will be receiving information about the surveillance findings. Potential audiences can include partners, stakeholders, health-care providers and the public.

Use of the surveillance data includes:
  • identifying trends of congenital anomalies
  • planning, implementing and evaluating evidence-informed interventions
  • motivating action in the community
  • informing policy-makers and government officials
  • informing clinical and public health practitioners, nongovernmental organizations and the public
  • identifying and referring children with special needs to applicable services.

With this information, strategies for improving health outcomes among an intended population can be developed, infrastructure barriers can be identified and remediated, and efforts can be made to gain the support of local and regional partners.

The primary users of surveillance information are usually public health professionals and health-care providers. The information directed primarily to those individuals includes the analysis and interpretation of surveillance results, along with recommendations that stem from the surveillance data. It is important that participating providers and institutions be informed of the situation in their participating facilities or hospitals, as well as in areas of the health system using the information to assess progress in this type of programme. If possible, a committee can be established, with the participation of technical experts and stakeholders, to facilitate discussions of issues related to security and confidentiality, statistical analyses, presentation and sharing of data, and evaluation of the feasibility and merit of collaborative projects. If data are analysed and presented effectively, decision-makers at all levels will be better able to visualize and understand the implications of the information.

A protocol for communication and dissemination of information can be developed to address the needs of a variety of audiences. This protocol can address questions such as:

  • What message is most relevant for a particular audience?
  • Is there a timeline for when data will be disseminated?
  • What will determine whether the information that was disseminated was useful and whether the objectives were reached?
  • What format and avenue needs to be used to reach this audience?

There are different avenues for data dissemination: paper based or electronic, or a combination of the two. By using technology, news releases, letters, brochures, reports and scientific articles can be made available in a web format or disseminated using social media outlets. Some examples of ways that data are disseminated can be found in references (6-11).