Toolkit for Health Needs Assessment in Congenital Disorders

Outline of Toolkit steps

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The Toolkit supports users to conduct a health needs assessment — HNA — in relation to congenital disorders. HNA is a systematic way to identify unmet health needs in a population.

Users of the Toolkit will be able to generate and assess data and information about the present situation and to prioritise actions to get to a desired future result, for example, a new service in a particular region.

More about the Toolkit


Our ultimate goal in developing the Toolkit is to improve health outcomes of people with congenital disorders and reduce the burden of these disorders. The initiative has a global scope, and focuses particularly on low and middle income countries. We aim to help users to develop or reformulate policies, programmes and services to reduce the burden of disease on individuals, families and the wider society. For more information see Overview Document to the PHG Foundation Toolkit for Assessing Health Needs in Relation to Congenital Disorders.


This Toolkit is a multi-stage process that enables users to assess health needs in their population related to congenital disorders; and prepare a strategy to improve care, reduce their associated birth prevalence, morbidity and mortality. For more information on health needs assessment and the methodology behind the Toolkit please read Introduction to HNA and methodology. Along with documents that allow you to carry out a health need assessment this Toolkit has a supporting document that provides information on related topics such as ethical, legal, social issues and health economics.


The Toolkit can be used at national and sub-national levels, by anyone wishing to develop the evidence base to give greater priority to the problem of congenital disorders. The needs assessment process will usually involve a range of participants, with different people assessing different topics, according to their expertise. Two main audiences are public-health decision-makers and geneticists. Further users may come from backgrounds including health research, clinical medicine and patient support.


This process begins with completing the Getting Started document which allows identification of topics and planning of the needs assessment process. The next step is completing a needs assessment. Needs assessment can be done for a single topic — however, we encourage users to complete needs assessments for multiple topics, to get a fuller picture of the situation in their population and to make a stronger case for policy action. In practice, the HNA process involves data gathering and user input on epidemiology and on current and desired services and policies. Together with a prioritisation tool these actions give users full information to judge what actions to take or advocate in their setting.

For more detail on using the Toolkit, select a country and look at the Guide to Using the Toolkit.

Creative Commons LicenseToolkit for Health Needs Assessment in relation to Congenital Disorders by PHG Foundation is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. To cite the Toolkit: The PHG Foundation. A Toolkit for Health Needs Assessment in Congenital Disorders. Available at: Accessed [date of access].

Disclaimer: The information contained in the Toolkit is correct as of September 2013, but users should be aware that research, policies and practice will continue to develop. Version 1.1 of the Toolkit contains updated datasets. For more information please see Guide to Using the Toolkit.

Acknowledgements: The PHG Foundation would like to thank all those who contributed to the development of this Toolkit. A full list of contributors can be found in the Introduction to HNA and methodology.