During the India’s National Disability Consultation in Delhi, I participated in one of the breakout sessions focusing on building an evidence & tracking process for the implementation of the Rights of Persons with Disabilities Act (RPWD). In today’s blog, I will be reflecting on the deliberations around data within the same context.
While appreciating the pivotal role data plays in building an evidence & tracking process, there was consensus to underscore this significance during collection, storage, processing / analysis, dissemination and use of data by making the following considerations.
I. Disaggregation of data
- Beyond the number of PWDs (persons with disabilities) there is need to establish where they are located.
- There is need to segregate the data not only by age and gender but by geography and other social factors.
II. Having the right instruments for data collection.
- Instruments need to be designed to allow for proper desegregation and to ensure that data collection goes beyond being a tick-box exercise.
- There is need to emphasize the need for good quality robust qualitative & quantitative.
- ethnographic data to capture experiences of PWDs including the sheer scale of marginalization faced by them.
III. Data safeguards
- How can we ensure that safeguards are complied with to ensure data protection, confidentiality and most importantly rights of PWDs?
- It is important to involve both PWDs and DPOs (Disabled People’s Organisations) not just in data collection, but in supporting the use of collected data to monitor progress
- At the end of the day use of data is most significant:
- How do we make sure that through data, developments programs are designed to be inclusive?
- How do we make sure that programs are designed to ensure disability remains visible in statistics?
- Do we have the right capacity within government, policy making circles, thinktanks, practitioners, NGOs for effective use data for design and implementation of programs within an evidence based approach?
- To aid policy makers with data, how can we ensure incorporation of the Washington Group Short Set of Disability Questions in future data collection exercises due to its simplicity, ability for segregation of type and extent of impairment within disability and scalability to include all 21 forms of disability?
Beyond the discussion, what next?
I see the potential of further supplementing the above by applying the Six Sigma 5W1H interrogation (who, what, where, when, why, how) tool across processes determining the following around data;
- Data needs – Justification, purpose, sensitivity/confidentiality and type (structured or unstructured, qualitative or quantitative)
- Data collection – Methods, quality and verification.
- Data use – Intent, purpose, Security, verification, minimization.
- Data storage – Medium, retention period, Security, Access, retention, Security and verification.
- Data disposal – Methods, retention, Security and verification.
- Data dissemination – Audience, Methods, retention, Security and verification.
For example, for data needs, one can ask;
- What data do we need?
- Why do we need the data?
- Where will we collect the data
- When will we collect the data?
- From whom will the data be obtained?
- How will we collect the data?
To protect data, confidentiality and rights of PWDs, the European Union’s General Data Protection Regulation (GDPR) regulations that came into effect in May 2018 can provide a good benchmark for testing data protection and privacy alongside local legislation.
Proverbs 19:2 Desire without knowledge is not good— how much more will hasty feet miss the way!