making sense of writing books and agreeing to be studied

I’ve got into the homestretch of my masters thesis research, studying Twitter use among people living with advanced, metastatic, chronic, terminal, or incurable cancer. There are still some analyses left to do, but I’ve started to write (and write, and write, and write some more) as a way to begin making sense of it all. I suppose this blog post fits within this sense-making activity too.

I loved speaking to and getting to know a small piece of those people who were gracious enough to let me interview them for this study. As the drudgery of going through data again and again and again starts to wear me down,  I find myself thinking back on some of those interviewees, mentally re-listening to the words they said and the emotions that came through as they spoke. I have a particularly soft spot for their laughter, and it gives me a wistful feeling thinking about deleting those audio files when this project’s finished.

I also find myself wondering what they’re up to now. It’s been a year or two since I spoke to most of them, so I can’t help but be curious about what’s changed in their lives since. In many cases I didn’t know their Twitter handle, but there were a few I ended up remembering for one reason or another. And so a few weeks ago I found myself looking up one of those people: Robin*.

When I spoke to Robin, they were in the midst of writing a book. This is not an uncommon thing for people living with cancer to want to do, as I quickly learned when I started working at Princess Margaret in 2010. Within weeks of starting the job I was introduced to several patients who had been writing and self-publishing their own memoirs, and have heard of many more doing the same since. For Robin, writing a book was something they’d always been interested in doing and since getting their terminal cancer diagnosis, it was a bucket-list item they decided to work on.

Anyway, so a few weeks ago I found myself wondering if Robin ever finished the book. I looked them up on Twitter to see what’d been happening since we spoke, and… well, Robin had died a few months after the interview. Logically-speaking, I recognize that this was a very real possibility. When we spoke, Robin told me they had already lived 4 times longer than the doctors expected when they were first diagnosed. Medically-speaking, Robin was not going to outlive this cancer diagnosis. Robin knew this, Robin’s doctors knew this, I knew this. And yet emotionally-speaking, I was not prepared to see this happen.

One of my first thoughts was that I’d hoped Robin was able to finish writing their book before they died, but I quickly realized maybe I was looking at things all wrong. I don’t believe Robin’s point was to ever “finish” the book, but rather it would forever be something that Robin worked on for as long as they could. The book would only be “finished” when Robin died (it’s worth saying here that I do not know if that’s how Robin felt, this is me sorting out thoughts).

But interesting still that the goal would be a book rather than a blog – something Robin also did, along with using other social media to talk about their disease. I don’t know if the book was ever (or ever will be) published, but having that goal in mind – to produce a tangible object that could last for decades, that has a sense of permanence – makes me wonder: Was the point to leave something behind, to leave (at least a piece) of Robin’s life story behind so they could leave a lasting mark?

Was that also the point of writing publicly on Twitter?

Was that also the point of participating in my interview? To leave a mark on me and anyone else who would read my research?

I’ll never be able to know.

 

 

* not their real name

New Publication! Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

I am so happy to announce I have a new paper published in JMIR, an open-access journal on medicine and the internet. Read the abstract below, and click the links to read the full article.

Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment

Authors: JL Bender, AB Cyr, L Arbuckle, LE Ferris

ABSTRACT

Background: The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them.

Objective: Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment.

Methods: We proposed a focus group study on the dietary behaviors of cancer patients and their families, and the role of Web-based dietary self-management tools. Using an established blog on our hospital website, we proposed publishing a recruitment post and sharing the link on our Twitter and Facebook pages. The Research Ethics Board (REB) raised concern about the privacy risks associated with our recruitment strategy; by clicking on a recruitment post, an individual could inadvertently disclose personal health information to third-party companies engaged in tracking online behavior. The REB asked us to revise our social media recruitment strategy with the following questions in mind: (1) How will you inform users about the potential for privacy breaches and their implications? and (2) How will you protect users from privacy breaches or inadvertently sharing potentially identifying information about themselves?

Results: Ethical guidelines recommend a proportionate approach to ethics assessment, which advocates for risk mitigation strategies that are proportional to the magnitude and probability of risks. We revised our social media recruitment strategy to inform users about privacy risks and to protect their privacy, while at the same time meeting our recruitment objectives. We provide a critical reflection of the perceived privacy risks associated with our social media recruitment strategy and the appropriateness of the risk mitigation strategies that we employed by assessing their alignment with PbD and by discussing the following: (1) What are the potential risks and who is at risk? (2) Is cancer considered “sensitive” personal information? (3) What is the probability of online disclosure of a cancer diagnosis in everyday life? and (4) What are the public’s expectations for privacy online and their views about online tracking, profiling, and targeting? We conclude with a PbD framework for online health research recruitment.

Conclusions: Researchers, REBs, ethicists, students, and potential study participants are often unaware of the privacy risks of social media research recruitment and there is no official guidance. Our PbD framework for online health research recruitment is a resource for these wide audiences.

Read the full article

Why do you tweet about your health? [research study]

I am looking to interview people living with advanced, metastatic, stage IV or chronic cancer who use Twitter to talk, listen, learn, and/or share updates about their health. Please share a link to this post on your Twitter, Facebook, or blog accounts.

Purpose

Under the supervision of Dr. David Wiljer, this study aims to explore Twitter use among people living with metastatic, advanced, and chronic cancers, and what that means in the lives of those living with a diagnosis.

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.

What does participation involve?

Participation involves:

  • one 25- to 40-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.

Who can participate?

We are looking for volunteers who:

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

How will my information be used?

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.

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.