Table 1 Summary of interview topic guide (version: patient)

Introduction

Introduction of the interviewers and stating of their credentials

Personal conversation to build rapport.

Asking permission to record and stressing voluntariness.

General health since the SCA.

Awareness and decision-making around participation

Knowledge of ARREST.

Handout 1: Information about the ARREST study.

Attitude towards medical research and reasons to participate.

Potential risks of participating, including privacy concerns.

Handout 2: List of the most important data collected during and after the resuscitation.

Informed consent preferences

Desired level of control (opt-in, opt-out, waived).

Specificity of consent and types of data.

Expiration of consent, including after death.

Informed consent in deceased and incapacitated patients.

Views on current ARREST procedure and timing (asked for internal evaluation).

Perspectives on return of individual genetic findings

Preferences on the disclosure of genetic findings to participants and next-of-kin.

Handout 3: Description of four variables (treatability/severity/clinical utility/validity).

The disclosure of genetic findings from deceased patients to next-of-kin.

Special cases: three scenario-sketches

René(e): who survives the SCA but becomes severely limited in understanding and communication due to neurological damage and thus unable to consent for data research.

Sam: who passes away suddenly due to SCA and was therefore never in a position to consent for research that uses their data.

Maxim(e): who survives the SCA and gives consent for data to be used in research. Maxim passes away some years later in a car accident: does the consent expire?

Other aspects of data governance

Perspectives on data protection and oversight.

Importance of patient engagement and participation.

Closing

Questionnaire with socio-demographic information.

Time for additional questions and remarks.

Evaluation and feedback: how was the experience of being interviewed?

Whether participant wants to receive transcript and findings.

Recruitment of next-of-kin, thanks and closing.