The Facebook Study information is hosted on this website because the lead Researcher, Dr. Katie Dainty, is also working on a research study regarding Cardiac Arrest Research Priority Setting Partnership.
Many Sudden Cardiac Arrest (SCA) survivors turn to health social networking sites, like Facebook, to talk about health issues and get medical advice from their peers.
Our goal in this study is to understand how SCA survivors and family members are using Facebook for information exchange and how we may be better able to address their information needs within the system of care.
We will be looking at the posts made in this group in a specific time period. This will include postings, number of likes, shares, external links and pictures. All personally identifying information mentioned in the postings will be deleted immediately after the collection of data. No information that could identify the poster will be used to protect their identity. We will then analyze the content of the posts and categorize them according to 4 categories.
Having a deeper understanding about how SCA survivors and their family members are using Facebook group will give us information about their questions and knowledge needs following sudden cardiac arrest. Our hope is that the results of this study will help the healthcare system to better address the information needs of SCA survivors and improve the quality of their health care experience.
You can opt-out at any point in the study by sending a personal message to Dr. Katie Dainty through Facebook.
What will be my benefit as a participant if you use my posts?
By allowing us to use the information in your posts, you will provide us with an opportunity to do valuable data analysis that can potentially improve the quality of health care experience received by SCA survivors, including you. The health care system does not have a systematic way of understanding what the information needs and concerns are for cardiac arrest survivors and this could inform new programs to help provide more useful information to survivors like you and their families.
Will my Facebook information be used (ie name, gender, personal information)?
Absolutely not, we are interested in the data as a whole not in individual details or personal information.
What will you do with the information in the postings?
First, we will remove all identifying information mentioned in the posts. Then, the content of the posts will be analyzed and grouped to determine main patterns and themes.
Will my information/post be kept confidential (ie personal experience with cardiac arrest)?
Yes, we are committed to respecting the privacy and confidentiality of our study participants. Any health information that is provided in the post will be kept private and confidential. In addition, all personally identifying information mentioned in the postings will be removed to ensure that your privacy and identity as a poster is protected.
Will you use direct quotes from my posts/comments?
We do not anticipate using many quotations but any that are used will be short and paraphrased to provide protection to the identity of the poster.
Are there any possible harms in participating in this study?
We don’t believe there is anything that would be harmful about having your Facebook posts included in this study. All data will be de-identified so there is nothing about your personal information or story that will be impacted.
Do I have to do anything during the study period?
No, we don’t require you to do anything other than post message within the group as you normally.
What will you do with the results?
The results of this study will be used as a guide for the health care system to better address the information needs of SCA survivors and improve the quality of their health care experience. We will publish the results in an academic journal and present them at academic conferences internationally. In both cases we will acknowledge and credit the participation of the Cardiac Arrest Survivors Facebook group.
Will you let us know about the results?
Absolutely, we'll be more than happy to share the results with you. Dr. Dainty will post the results of the study in the Facebook group as soon as they are ready.
Who do I contact if I have questions about my right as a research participant?
You can contact the Chair of the North York General Hospital Research Ethics Board, Dr. Alan Fung at Alan.Fung@nygh.on.ca
If you have any questions or concerns that were not addressed here, please feel free to contact the lead Researcher, Dr. Katie Dainty at firstname.lastname@example.org