#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.

On Saying Yes: Another MasterLab Reflection

Have you ever been witness to something unjust – someone being teased or treated unfairly? Chances are you have. Chances are also high that upon witnessing such an event, you have felt a specific kind of deep-seeded urge to somehow restore that balance and justice. However, if you are anything like me, that urge is often ignored. I push it away in fear of possibly making the situation worse or because I feel virtually powerless to help. What is more, this urge bubbles up for bigger events, too. For example, my injustice antenna alarms wildly when I hear about a person with a diabetes being hospitalized because they couldn’t afford insulin. I become simultaneously angry and helpless toward a system that unfairly discriminates against those living with chronic illness by making them pay for their life-sustaining medicines. I sometimes feel powerless to make any change to that system because I rely on it for my own wellness, and because I am just one single person. Being at MasterLab this year was eye opening in that it truly challenged the helpless part of my response to the injustice antenna going off.

One of the best talks of the day, and the only one that got a standing ovation, was given by Roniece Weaver, Executive Director of Hebni Nutrition Consultants, registered dietitian and author. She spoke about collaboration and sustainability when attempting to make change with underserved communities. Weaver began her talk with an array of statistics and findings from her own studies on nutritional educational program interventions. Her strategy was to provide nutritional education to communities who lacked access to such information. At first I was rolling my eyes.

I thought to myself, “Here we go another researcher blaming diabetes on individuals for poor food choices and ‘lifestyle factors’; Another researcher who expects that the prevalence of diabetes is a problem of the person and not the society and environment in which that person lives.”

However, about midway through her talk, Weaver’s tune changed. She shifted her position to include the social components contributing to health disparities between privileged and underserved populations. Weaver and her team went beyond education. They also brought produce to the mom&pop shops in food deserts that typically only served the usual gas station food options. Weaver said, “we needed to increase access to whole foods,” but doing so is “not about putting a big box store into a neighborhood, that wouldn’t be affordable.” In a place where food insecurity is high (meaning low-income, using food stamps etc.) opening an expensive grocery fails to meet people where they are at. Diabetes Advocate, Cara Richards tweeted the following:

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My ears perked up with surprise. Maybe Weaver wasn’t just another researcher blaming health issues on individuals over social conditions. Maybe Weaver was presenting something else entirely… Turned out, she was.

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Weaver’s whole message shifted dramatically in my eyes. Her research wasn’t blame-based, it was solution-based. What she shared next had advocates in the room tearing up. Weaver then told all of us about her own methods of advocacy and what practicing those methods did for one community.

Meet FreshStop, a produce shop on wheels.         bus_loading

The concept of FreshStop was inspired by a subscription box service called Blue Apron that delivers fresh produce with recipe cards for making quick healthy meals at home. Though innovative and convenient for those wanting to improve mealtime at home, Blue Apron is not affordable for the average joe. Weaver recalled her thought process, “How do you get something like Blue Apron into low-income communities?” How do we open up health-forward innovations to those who are routinely denied access? Isn’t that the question we all ought to be asking?

How do we increase the reach of the innovations and programs we advocate for to include those who perhaps need it most?

As a person with diabetes, I want tech advancement to happen because I want living with diabetes to be less of a burden on me. As an advocate, I want those innovations to extend beyond people like me who are privileged enough to have insurance, access to local knowledgable doctors, friends in the diabetes community, access to higher education, and time to self-manage. As an advocate, I know that for our system to be just and fair, all who are interested ought to have access to the medicine and medical equipment.

Weaver is a bold advocate and researcher who is a living example of how to extend innovation beyond the bounds of privilege. Her work reminded me that I am not powerless  within the system that perpetuates injustice and health-disparities.

At MasterLab, through Weaver’s talk among many others’, I learned that giving in to the feeling of powerless is but another way to say no. And, I don’t want to say no. I want to act on that urge I feel to restore justice when witnessing unfairness. I want to give up passivity and try harder.
And I know that the only way I can create change is if I try.
The only way to go beyond the bounds of privilege is to reject the feeling of powerlessness and say YESgiphy

Yes, I can stand up to injustice.

Yes, I can be creative and find solutions that go beyond the bounds of privilege.

Yes, I can be an agent of change.

Yes.

 

#MasterLab Recap and Thanks

1-300x300Last week I attended #MasterLab, an advocacy event put on by Diabetes Hands Foundation through their Diabetes Advocates program. Overall the day was a spectacular success. Throughout this week, I will release reflections on specific talks. For now, a general overview of the event with gratitude toward the organization that made it all happen.

Brief Recap:

Not only did this advocate-centered event provide vital advocacy information about clinical trials, workplace protection laws, and legislation practices, but also gave time to discuss critical aspects of DOING the work, like prioritizing self-care, and being bold in the ask process. On top of covering a wide range of topics, MasterLab attendees were provided Advocacy Plan workbooks to begin PHYSICALLY drafting a personal advocacy plan. AMAZING, right?! MasterLab wasn’t just about hearing the information, nor was it just about bringing everyone together to foster community-support and groundswell around individuals’ advocacy efforts. MasterLab was about providing a practical formula for generating plans of action. It was a truly masterful event (please excuse that dad-joke, I couldn’t help myself). I will be sharing the advocacy plan I wrote and shared while in attendance at MasterLab in the next few days.

Sincere Thanks: 

I want to take a moment to thank everyone who made MasterLab happen. Diabetes Hands Foundation, you continue to add so much value to the community. I thank you for making us, the advocates, your advocacy project. Our community is more equipped and more organized in our advocacy efforts because of the events and resources you provide. Thank you.

Also, there were many sponsors who funded MasterLab itself, and also forked over a chunk of change for many of the advocates in the room to be there. Bringing us all together is vital to our success, and I thank every single sponsor that contributed to our physical togetherness.

Last but not least, I want to thank all of the friends who offered hugs and support at MasterLab. My life is better because you are in it. The tribe we have all made and are part of keeps me going in my own self-management, research, career, sanity, the list goes on and on. Thank you for being you and for continuing to attend these in-person growth-inspiring events.

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Pre-Conference Excitement: MasterLab Edition

Diabetes advocates are my favorite people and I get to see many of them in just a few days. Suffice it to say I’m a little more than giddy. I’m practically bouncing out my chair right now as conversations in the Facebook group turn to packing tips and roommate assignments.

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My current mood

So what is bringing all of us together?

MasterLab!!

MasterLab is a diabetes advocacy event hosted by the Diabetes Hands Foundation through their Diabetes Advocates platform and program. To make things better for attendees (e.g. patients who have medical bills for days) they offer a number of scholarships that include travel and hotel stay. I received such a scholarship, making my own attendance possible.

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Tearfully grateful

Why is MasterLab so wonderful? Well, they bring in speakers who deal in advocacy as it related to diabetes and as it related to disability in general. Speakers like Mark Heyman (who I am personally indebted to for editing the application that got me accepted to graduate school) are sure to both inform and inspire. At what other event can you find a lineup of speakers who so broadly address matters of advocacy geared toward the advocates themselves?

The following are taken directly from the Diabetes Advocates MasterLab event page. Two  of the offered sessions are:

  • “Diabetes and Mental Health: Advocating for Others While Taking Care of Yourself” Dr. Mark Heyman, Center for Diabetes and Mental Health. Mark Heyman is a diabetes psychologist, person with type 1 diabetes, and Founder and Director of the Center for Diabetes and Mental Health. We will learn how can advocates communicate the psycho-social and emotional challenges of diabetes in their advocacy work and take care of themselves in the process.

AND

  • “Building Collaboration and Sustainability in Programs for Nutrition and Access, in Underserved Neighborhoods”. We will learn from Roniece Weaver, Executive Director of Hebni Nutrition Consultants, Registered Dietician and author, about how she has brought health messages to underserved populations in Orlando, in a different delivery mode. This is a great example of the opportunity  that might exist in your community, to work offline, make a difference and support local, smaller organizations.

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Aren’t those amazing!?

Is your mind completely blown like mine was?!

If these descriptions appeal to you, but you are not attending MasterLab, fear not!

I, along with many other advocates, will be there live-tweeting and blogging about everything we learn.

If you are interested in participating in the live-tweeting, follow me here @HeatherGabel, and make sure to check in with #MasterLab.

You will not miss a thing. Promise.

See you at MasterLab!

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