A suggested Model for HVP Country Nodes


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The aim is to come up with an agreed de nition of what is a well-functioning Country Node and how it connects with other related services both nationally and internationally. Developing such a definition provides a 'standard' of performance and can assist in identifying the key areas to help develop and
strengthen the performance of individual nodes. As part of an international network, individual country nodes contribute to open and transparent data sharing. If a de nition of a well-functioning country node
can be developed that almost all Human Variome Project Consortium members can agree on, it can also
help achieve several other related objectives.

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A suggested Model for HVP Country Nodes

  1. 1. A Suggested Model for HVP Country Nodes Timothy D. Smith and Helen Robinson Human Variome Project International Ltd
  2. 2. Purpose – what are we trying to do here?• The aim is to begin a conversation about what might be the characteristics of a well-functioning country node and how that node connects with other related services both nationally and internationally.
  3. 3. Promoting discussion of what is a ‘well-functioning’ Country Node may…• Bring into the open areas of agreement and disagreement• Help devise a common language and agreed terms to describe the functions of a country node• Bring the membership together on an agreed and acceptable standard• Help to set standards for education, ethical practice, dealing with issues of consent etc• Promote knowledge sharing across membership to support the development and growth of new nodes in a more focussed way• And ….?
  4. 4. Diversity not standardisation• There are many ways of being successful• Being international, the Human Variome Project covers the full range of cultural, religious, ethnical social and economic diversity• Utilizing this diversity will produce a better result• Sharing knowledge between country nodes will help achieve the goals of the Human Variome Project
  5. 5. How would you start to define a well-functioning country node?
  6. 6. Five RowsThe rows are the various elements or aspects that go to make up a fully functionalCountry Node; we are suggesting five that align with the main activities of HVP:• Data collecting and sharing• Having the necessary resources to deliver cost-effective and equitable services – human, technical, financial• Ethical, legal and social issues – having the necessary regulatory frameworks, policies, tools in place• Planning for service delivery in context of public health• Degree of connectedness with others in the community - health and non-health
  7. 7. Five ColumnsThe columns represent stages in development and functioning of Country Nodes; they seek todefine/describe benchmarks or stages in the progressive development of a country node• STAGE 1 = Getting ready, getting started• STAGE 2 = moving to a more formalised way of working - we know we need to do something, and we are in the process of determining/agreeing our plan; key players are being identified• STAGE 3 = we have some idea of what is needed and are doing what we can, given the resources we have; there are some signs that progress is being made and that these successes will help align future efforts; key players are coming ‘on board’• STAGE 4 = we know what needs to be done, we have a plan and are making demonstrable progress; key players are aligned around an increasingly consistent set of messages• STAGE 5 = fully functional and improving quality and efficiency, and helping others to improve
  8. 8. Indicators• suggestions of observable features of a country node functioning over time; they aim to set some levels of performance, some ways of distinguishing levels of performance,• stimulating discussion around specific areas for improving performance and to diagnose some priority areas of activity for better /improving performance