Update to the HDEC Application Form (v1.29): New Disability Questions and Sponsor Authorisation
To align with the National Ethical Standards on Health and Disability Research(external link) a new section on disability will be added to the HDEC form for all studies involving human participants. The new questions are included below and address access, barriers, funding, consultation and comorbidities.
The updated form also includes a change to sponsor authorisation and will differentiate between commercial and institutional sponsors.
Version 1.29 of the HDEC application form will go live on Monday 05 December 2022.
New Section - Value for Disabled People
Almost one in four New Zealanders (24% of the population) identified as disabled in 2013, according to the New Zealand Disability Survey. (external link)At present, there is a lack of data about disabled people, their lives, and their needs that would allow researchers to meet their obligations to disabled people. Because of this, researchers must recognise the intersectionality of human identity, and that some people identify with multiple ethnicities and social groups, including disabled people. This means that all health research, not just disability research, has potential to involve disabled people.
For further guidance on disability research and health research involving disabled people please review Chapter 5 of the National Ethical Standards. (external link)
The below are the new questions being added.
Barriers and Access
Are there any barriers that you can identify within your study which may exclude disabled people from participating?
['Yes/No' question]
[If preceding question answered 'YES']
Please describe how these barriers will be addressed and how the study will be made accessible to disabled people so that they have equal opportunities to participate in health research (e.g. supported decision-making, flexibility of timeframes, locality/site access, easy read documents, NZSL interpretation, etc).
[Free text question]
[If preceding question answered 'NO']
Please describe how your study is accessible to disabled people and the actions taken to ensure this (e.g. supported decision-making, flexibility of timeframes, locality/site access, easy read documents, NZSL interpretation, etc).
[Free text question]
Funding
Please provide details on any funding that may be available to provide accessibility services (separate to any koha or reimbursement as part of standard participation).
[Free text question]
Design/Consultation
Researchers should consider the importance of a disability advisory group or researcher when reviewing the research design for disabling aspects. Please explain whether disabled perspectives were included in the study design for review.
[Free text question]
Comorbidities
Will comorbidities from disabilities or impairments be interpreted in the study data?
[Free text question]