CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

Recommendations

  • Partnering with community based organisations — Organisations of Persons with Disabilities (OPDs) or youth-led organisations — to design research and data collection processes will ensure the right questions get asked based on their priorities and needs. This results in stronger data being collected through a deeper rapport these organisations have with their communities, and ultimately better insights will be generated.
  • Establishing diverse and cross sector partnerships to design and generate data can help to ensure that citizen-generated data informs a broad range of programmes and policy decisions, for example partnerships between OPDs and authorities such as the National Census Bureau can help to ensure disability data is desegregated, analysed and counted in the census and will inform policies that support persons living with disabilities.
  • Collecting disaggregated data — for example by disability, gender and age — enables evidence-based advocacy campaigns, to implement and monitor inclusive policies that adhere to principles of Leave No One Behind and other international frameworks, such as the United Nation Convention on the Rights of Persons with Disabilities (CRPD).
  • Ensuring all data collection measures include the Washington Group Questions (WGQs) on disability statistics will enable data to be disaggregated by difficulty or functional limitations and this data becomes globally comparable. It is imperative that enumerators are properly trained on how to administer the WGQs correctly.
  • Collecting feedback through digital platforms has opened up access to data in new ways, but also comes with new risks. Communities need to be supported and safeguarded to access data platforms securely and have their human rights protected online.
  • Short-term, non-continuous and restrictive funding is often the norm for organisations leading citizen-generated data initiatives. More flexible funding streams from donors will enable organisational growth, helping to build capacity on the production and use of citizen-generated data.
  • Inclusion must be budgeted from the start, to ensure there are enough resources allocated to support the active and meaningful participation of communities throughout data collection initiatives, including the most marginalised or excluded.
  • Donors should mandate disaggregated disability data in all required reporting materials and provide the resources to make this feasible to ensure more inclusive programming and policies.

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