A study on the risk communication of disease clusters

Principal Investigator:
Niko Yiannakoulias
School of Geography and Earth Sciences
McMaster University
Hamilton, Ontario, Canada
(905) 525-9140 ext. 20117
yiannan@mcmaster.ca

Student Investigator:
Cathy Slavik
School of Geography and Earth Sciences
McMaster University
Hamilton, Ontario, Canada
(905) 525-9140 ext. 28611
slavikc@mcmaster.ca


Research Sponsor: Social Sciences and Humanities Research Council (SSHRC)

Purpose of the study:
Our study aims to explore how health risks are perceived and understood differently by different groups of people with varying levels of health expertise. Our research will help us learn how to better communicate health risks, particularly when clusters of diseases are investigated, so that key messages are more effectively transferred between risk communicators at health agencies or in the media and members of the public.

You are invited to take part in this study on health risk communication. We want to improve the current approaches to communication and we are hoping to learn about ways that people could more effectively acquire and retain important information on health. I am doing this research for my thesis as part of my doctoral degree at McMaster University.

Procedures involved in the research:
You will be asked to provide some basic demographic information such as age, education and health status. You will then be asked to read a short written piece about a non-infectious disease cluster. After this, you will be asked about your views about the written piece and how you interpreted the information that was provided. Finally, you will be asked about your level of concern about certain information that appeared in the written piece. Note that there are no 'correct' answers, rather we want to gather information about your individual perceptions and beliefs.

Your participation in this study is expected to require about 10 to 20 minutes of your time. You can participate online using any mobile device with an internet connection, at one of our designated laptops if done in person, or as a written paper copy. You may choose to quit and restart the survey at a later time if you prefer.

Are there any risks to doing this study?
The risks involved in participating in this study are minimal. You may feel uncomfortable with answering certain questions on health. You may choose to not answer certain questions, should you feel discomfort, and you may exit the study at any time. We will be offering participants a support document with some helpful resources on health risks if they would like more information after participating in this study.

Participation in this study is completely anonymous. However, prior to participation, you may choose to provide your email address (which is optional) to become eligible for the prize draw or to receive updates about the study from the researchers. To ensure that your email address cannot be connected to the survey responses you provide, the email address will be collected and stored on a private server maintained by the Principal Investigator, while the survey and experiment are completed on a separate disconnected platform through Google Forms. The digital database where the emails are submitted and stored is separate from the survey responses, providing anonymity to each survey response. This digital database where your survey responses are stored is also password-protected, encrypted during transport, and requires two-step verification, therefore, your individual responses will not be identifiable at any point.

Potential benefits
This research could benefit you indirectly by making you more aware and knowledgeable about health risks and how to potentially mitigate your risks to health. Your community may benefit in the long-term through changes in communication policies and strategies, which inform the public about important health risks. We hope that the results of this study will inform future risk communication practices conducted by governments, the media and other risk communicators whenever they need to communicate health issues to the communities they serve.

Payment or reimbursement for participation
If you participate in our study online, and choose to provide us with your email address, you will be entered into a draw for a chance to win 1 of 4 prepaid gift cards valued at $50 each. Withdrawing from the study will not impact your chance of being selected to win.

Confidentiality
Any information you submit for this study will be confidential. We will not be collecting your name or any information that would allow for you to be identified in our survey. No one will know whether you participated in this study unless you choose to tell them or unless you willingly provide your email address for the purpose of the prize draw.

All responses are provided online, and if you choose to provide your email address, it will be stored on a secured private server. Survey responses will be stored in a separate password-protected database on Google Drive, which requires two-step verification. Survey responses are anonymous by storing the optionally provided email address and the survey responses in separate places, with the email being stored on a private server maintained by the Principal Investigator, Dr. Yiannakoulias. If your email is drawn for the prize, or if you choose to be contacted with the study results, you will be emailed accordingly. After approximately September 2029, 10 years after collecting the data, the database will be destroyed. The reason the data is stored securely for 10 years is to allow us to compare the results with new findings, should we decide to continue with this research topic in the future, and for the purposes of publication should an academic journal request re-analysis of the data.

Participation and withdrawal:
Your participation in this study is voluntary. If you consent to participating, you can stop (withdraw consent) from the survey for whatever reason, even after you consent to participating or part-way through the survey. However, since the survey responses are anonymous by disconnecting them from your email, if you have chosen to provide us with one, we cannot withdraw your survey responses once a survey has been completed and submitted to the researchers. If you provide us with an email address for the prize draw or to receive updates on the research study after it is completed, you can withdraw your email address at any time prior to July 1st 2021 when the research study is expected to be complete. After this point, the secure password-protected database containing the email addresses voluntarily collected from participants will be destroyed. You can exit the survey on every page by exiting the survey window, enabling you to withdraw if you choose to. However, only submitted surveys become eligible for the prize draw. Withdrawing your email, if you choose to provide it, also excludes you from the draw prize since it is the identifying point of contact to reaching you.

Exiting the survey and withdrawing from the study while in the middle of completing it has no consequences to you, and the data you entered up until that point will be destroyed. We encourage you to answer all questions provided, as they have been selected to provide some generalizability and are disconnected from your email. If you choose to leave some sections blank you will still be eligible for the prize draw. Each question has been carefully selected and deemed important for our understanding of the perception and communication of health risks, so we encourage full completion.

How can I obtain information about the study's results?
I expect to have this study completed by approximately June 2021. If you would like a brief summary of the results, you may optionally provide an email address for us to get into contact with you. An option for providing contact information for this study's results will appear later under the 'Consent' section.

Questions about the study:
If you have questions or need more information about the study itself, please email me at:

slavikc@mcmaster.ca

This study has been reviewed by the McMaster University Research Ethics Board and received ethics clearance. If you have concerns or questions about your rights as a participant or about the way the study is conducted, please contact:

McMaster Research Ethics Secretariat
Telephone: (905) 525-9140 ext. 23142
C/o Research Office for Administrative Development and Support
E-mail: ethicsoffice@mcmaster.ca

CONSENT

  • I have read the information presented in the information letter about a study being conducted by Cathy Slavik and Dr. Niko Yiannakoulias of McMaster University.
  • I have had the opportunity to ask questions about my involvement in this study and to receive additional details I requested
  • I understand that if I agree to participate in this study, I may withdraw my email address at any time up until July 1st, 2021, if I have opted to provide one. However my survey responses once submitted cannot be withdrawn since they are anonymous.
  • I am aged 18 years or older.
  • I agree to participate in the study.

Please type your email into the box below if you would you like to participate in the draw to win a prepaid gift card.

Uncheck this box if you do not wish to receive summary of study results

Please email slavikc@mcmaster.ca if you have any technical difficulties, or wish to confirm that your email address was submitted and you are eligibile for the draw for a $50 gift card. If you do not want to participate in this survey, please close the browser window.