What does all this tweeting about health really mean? Expanding our understanding of Twitter & disease [research study]

I want to help build our understanding of how Twitter is used in health, particularly around healing. Will you help me by sharing this post?

With more than 560 disease-related hashtags registered on Symplur’s Health Care Hashtag Project, it’s clear that people are using Twitter to talk about health. The academic world has recognized this and has gradually been building scientific proof since Twitter launched in 2006. At the end of 2014, I searched published academic literature for papers on Twitter and consumer health and found studies on cancer, drugs, medication, communicable diseases, smoking (including e-cigarettes), mental health, exercise, pain, cardiac arrest, childhood obesity, concussion, dementia, epilepsy, orthodontics, palliative care, vaccines, and weight loss. I’m sure that list comes as no surprise to seasoned Twitter users – people seem to talk about everything on Twitter!

So while academics have shown that people tweet about health, we haven’t really got too far in exploring how it all connects to the daily lives of Twitter users. It’s an area worth exploring. The new online social tools of the last decade have become so ingrained in our daily lives, yet we don’t have a lot of research to show how it has shaped our “offline” lives. As Marie Hardin wrote in 2014,

“The next logical step after we have a good sense about [what Twitter is, how people use it, and for what purpose they use it] is to pursue studies that put a much higher priority on the wider sociocultural context and on theory. In other words, providing much more substance about what all this tweeting really means and its implications for what we already know. What is consequential and how so?”

It’s a huge topic that will take many researchers and even more studies, but I hope to tackle just a small sliver of it through my thesis.

One of the first published papers on medical anthropology ends with an idea that may explain why so many people turn to Twitter to talk about their health:

“… the increasing technical control [in medicine] has been accompanied by the separation of efficacy from meaning, progressive dehumanization of the healing function, so much so that we are seeing traditional healing activities surface in the wider social structure just as they are disappearing from clinical practices. ” (Arthur M Kleinman Inquiry, 16 (1973), 206-213)

What Kleinman is suggesting is that as we get better at treating the biological parts of disease through the development of modern medicine, the social connection of healing, common in traditional healing activities, disappears from the clinical encounter and instead happens in other social contexts. It made me wonder: is Twitter one of these other social contexts?

I am looking to interview people living with advanced, metastatic, or chronic cancer who use Twitter to talk about their health. You can help me by:

  • Sharing this post
  • Reading on to learn more about the interviews

Study Information

What is the purpose of this study?

Under the supervision of Dr. David Wiljer, this study aims to explore Twitter as a place of healing among people living with advanced, metastatic, or chronic cancers, and what that means in the lives of those living with a diagnosis. Through this study, we aim to describe healing-related activities and expressions used on Twitter and to gain a deeper understanding of how they relate to users’ daily lives.

This study is being conducted by Alaina Cyr to complete a thesis as part of the requirements for earning a master’s degree in Health Services Research at the Institute for Health Policy, Management, & Evaluation at the University of Toronto.

Who can participate?

I am looking for volunteers who:

  • are living with an advanced, metastatic, or chronic cancer diagnosis (including stage IV or terminal cancers)
  • use Twitter to talk, learn, or share updates about your health
  • can speak and read English
  • are 18 years old or over

What does participation involve?

Participation involves:

  • one 45- to 60-minute interview by telephone or Skype (your choice)
  • having a conversation about what role, if any, Twitter plays in helping you share your experience, make sense of your diagnosis, and define yourself

You can decide to end your participation at any time, or skip a question should you wish to do so.

All information collected in this study will be held in strict confidence. Your personal information will only be accessible to the investigator, Alaina Cyr. All files will be saved with code names and stored in an encrypted folder. Your identifying information will not be used in any publication or presentation. Identifying information includes things like your name and the names of other people, cities, and hospitals.

This research study is being conducted at the Institute for Health Policy, Management, and Evaluation at the University of Toronto, and is not affiliated with a cancer treatment centre. Your decision to participate or not participate will not impact your clinical care.

For more information or to volunteer:

Contact Alaina Cyr at alaina.cyr@mail.utoronto.ca for more information about this research study.

If you have questions about your rights as a participant, please contact the Research Oversight and Compliance Office – Human Research Ethics Program at ethics.review@utoronto.ca or 416-946-3273.

 

This research study was reviewed and approved by the Research Ethics Board at the University of Toronto.

To prevent disclosure of personal information, please note that comments must be approved before they appear below.

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