#DSMA for Research, Option to Opt-Out

Happy #DSMA day! Thank you for visiting this page to learn more about the study. This is also the post where you have the option to opt-out. All study details are below.

Here is the opt-out form. If you would like to participate in the twitter chat but do not wish to have your responses collected as data for this study, please fill out this form. If you would like your tweets to be included, please leave this form blank.

Information about this study:

This #DSMA chat is a research opportunity which is one part of my larger dissertation project. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of diabetes online communities (DOCs) in order to better understand how the condition of diabetes is being politicized via online social media spaces. This means I am collecting diabetes-related social media data and analyzing it for narrative themes and their connection to social phenomena.

There are some risks to participation. Because the data collected for this study is public-facing social media data, there is a high risk that your privacy and confidentiality will be compromised. While measures have been taken to protect your privacy after the data has been collected (removal of identifiers), there are no protections to privacy within the group or outside because anyone can see or track the content shared on Twitter. There is no compensation provided for this activity. This research may not benefit you directly, however it is possible that the published findings will eventually benefit diabetes communities at a wider level.

Please note that by NOT opting out, you are consenting to allow the research to collect your responses and use them in the data analysis process. In this way, you are considered a research subject. Your tweets will be analyzed thematically. If the researcher would like to quote you directly, you will receive a DM asking for your email address, and a personalized email will be sent to you with the quote requested. If you do not approve, the quote will not be used. This is in line with the Twitter Terms of Service.

Again, if you do consent to use of your data (not opt-out), you will be considered a participant of this research study. This study will enroll a maximum of 2,180 subjects. Your participation does not involve any other activities. However, if you would like to be contacted for other study- related opportunities (eg. in-depth interview), please fill out the form below.

More Information:

WHY IS THIS STUDY BEING DONE?   The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of DOCs in order to better understand how the condition of diabetes is being politicized via online social media spaces. While the overall study has multiple phases, this #dsma tweet chat is a part of phase 2. During this phase, the researcher will be collecting social media data over a 3- month from individuals who share about diabetes through various social media platforms. The purpose of phase 2 is to understand the cultural context of the research site in an empowered and nuanced way.  
WHAT WILL I BE ASKED TO DO DURING THE STUDY?   Participation in this tweet chat will mimic regular #DSMA chats. There will be a set of questions asked and you may answer them however you see fit. You are encouraged to interact with others involved in the chat as well. The chat will last 60 minutes and will ask 6 questions.  You will be asked about common diabetes misconceptions, how diabetes is a part of you, and what you want people to know about diabetes. You may also be asked to consent to the quoted use of your social media data, which is optional.  
HOW MUCH TIME WILL I SPEND ON THE STUDY?   The 60-minute tweet chat will take on [DATE] at 9pm EST.  
ARE THERE ANY BENEFITS TO TAKING PART IN THE STUDY?   Being in this research study may not benefit you directly, but it is possible that the findings produced by this inquiry may indirectly benefit your respective diabetes online community.
WHAT ARE THE MAIN RISKS OF THE STUDY? The primary risks presented by this research study are breaches of privacy (others outside of the study may find out you are a subject) and/or confidentiality (others outside of the study may find out what you did, said, or information that was collected about you during the study).  Although we ask everyone in the group to respect everyone’s privacy and confidentiality, and not to identify anyone in the group or repeat what is said during the group discussion, please remember that other members of the group may accidentally disclose what was said.   
DO I HAVE OTHER OPTIONS BESIDES TAKING PART IN THE STUDY?   This research study is not designed to provide treatment or therapy, and you have the option to decide not to take part at all or withdraw your participation at any time without any consequences.

Your identifiable data will be kept only on a master list on a passcode locked computer that is not Wi-Fi-enabled to prevent access by unauthorized personnel. Once data analysis is complete, your identifying information in the master list will be destroyed. The data you shared, once de-identified (within 24-hours of the time the PI receives your signed consent form), will be stored in a password protected UIC Box file for a period of five years.

This message has been approved by the ethical review committee at my university. For questions, concerns, or complaints about the study, please contact the PI, Heather Walker at530.755.7673 or email at hgabel3@uic.edu or the faculty advisor, Dr. Joy Hammel, at 312-996-3513 or hammel@uic.edu

If you have questions about your rights as a study subject; including questions, concerns, complaints, or if you feel you have not been treated according to the description in this form; or to offer input you may call the UIC Office for the Protection of Research Subjects (OPRS) at 312-996-1711 or 1-866-789-6215 (toll-free) or e-mail OPRS at uicirb@uic.edu

To print a copy of this form for your records, right click on the webpage and select print. Then select “save as PDF”. Doing this will produce a printable copy.

Officially Recruiting! #DSMA Tweet Chat April 24th

I’ve been updating you about my dissertation research via this blog for quite a while now and I am happy to share a new IRB approved research opportunity happening on Wednesday, April 24th during the regularly scheduled #DSMA chat. Below are some details about the projects as well as the who, what, and when!

Project details

The following research opportunity is one part of my larger dissertation project. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of diabetes online communities (DOCs) in order to better understand how the condition of diabetes is being politicized via online social media spaces. This means I am collecting diabetes-related social media data and analyzing it for narrative themes and their connection to social phenomena. Up to 2,180 participants will be enrolled in this study.

The current research opportunity

I will be hosting a 1-hour long #DSMA tweet chat as one component of my larger project. #DSMA was selected as a research site because it has been a regular meeting place for people with diabetes and caregivers of people with diabetes for a very long time. I, myself, have participated in the chat too many times to count over the last five years! For this study, I will use both my personal twitter account, @Heather_RoseW, as well as the official diabetes social media advocacy (DSMA) account, @diabetessocmed. Please follow both accounts in preparation for the chat.

Who Can Participate?

Any one touched by diabetes is welcome to participate! A tweet chat is designed to be open and free flowing. All who would like to join in can. There will be an opt out procedure linked out several times during the chat. You can participate in the chat AND opt out. This just means that your tweets will not be used for research purposes. If you want to join the conversation but not be a part of the project, clink on one of the opt-out links during the chat.

What Will Be Asked?

Below are the questions that will be asked during the chat. Please feel free to prepare your responses ahead of time!

  • What is the most common diabetes misconception you hear and how do you react when you hear it?
  • What do you wish people knew about diabetes?
  • To what extent is diabetes a part of who you are? 4) How would you describe your diabetes-related online interactions to a person without diabetes?
  • Why do you participate in the #dsma tweet chat?
  • Imagine a diabetes-related hashtag you made up went viral, what would the # be and it what would it be about?

When will the chat take place?

The #DSMA chat will take place on Wednesday, April 24th during the regular #DSMA time, 9pm EST. The chat will last one hour.

If you have any comments or questions, please email me or write in the comments. I’m so excited to be able to share this opportunity with you. Another post with all opt-out information will be posted the day of the chat.