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Article History

Received: 5 March 2020

Accepted: 7 October 2020

First Online: 16 October 2020

Ethics approval and consent to participate

: With the Disability Rights Education and Defense Fund as the lead organization for this project, human subjects review was submitted to the Institutional Review Board of the Public Health Institute (PHI), Oakland, California. The Human Subjects Review Committee of the Public Health Institute IRB gave approval for this project, reference number IRB # I17–004. The Syracuse University Institutional Review Board subsequently executed an agreement with PHI indicating it would rely on the Public Health Institute IRB approval to meet its obligation to approve the project. The IRB approval included use of oral consent for the focus groups and patient telephone interviews. At the start of each focus group, a Study Information Sheet and Oral Consent Form, approved by the IRB, was read to the persons who had volunteered to participate. Then they were asked for their oral consent with the understanding they could withdraw it at any time. Written consent was not felt necessary because the procedures did not require written consent outside of the research context. For the patient interviews, patient-respondents who had access to email received the consent form electronically to sign and email back. If they did not have email, consent was obtained orally by reading the consent statement at the start of the interview. Oral consent was necessary for these persons because disability-related limitations or low income made it difficult for them to get their mail, sign, and return the consent form.

: Not applicable.

: The authors declare they have no competing interests.