Books I read in 2017, ranked from best to worst

Last year I posted Books I read in 2016, ranked from best to worst, so here’s my list for this year.

I realized that more than half of the books I read in 2016 were written by white men, and thus all the recommendations I got from Goodreads were for books also written by white men. My goal for this year was to read at least 26 books written by People of Colour or trans/non-binary people, and I believe I have exceeded that goal (though there are still a few books on the list below written by cis white people).

Book count:

Screen Shot 2017-12-30 at 2.48.54 PM

Page count:

Screen Shot 2017-12-30 at 2.49.18 PM

As with last year’s post, I’ve broken down the list into different categories based on how I enjoyed the stories:

  • Numbers 1 – 10 are joining my list of favourites
  • Numbers 11 – 18 were very good, and I would happily read them again
  • Numbers 19 – 31 were good, but not my taste. I would not choose to read them again, though I may recommend them to someone else.
  • Numbers 32 – 38 were not so good, would avoid re-reading and would only recommend to others in very specific circumstances
  • Numbers 39 – 40 were terrible and I would not recommend to anyone

Best Reads of 2017

  1. The Drowning Girl by Caitlín R. Kiernan
  2. The Hate U Give by Angie Thomas
  3. Every Heart a Doorway (Wayward Children, #1) by Seanan McGuire
  4. Small Beauty by Jai Qing Wilson-Yang
  5. The Summer We Got Free by Mia McKenzie
  6. Bow Grip by Ivan Coyote
  7. Version Control by Dexter Palmer
  8. The Lamb Will Slaughter the Lion by Margaret Killjoy
  9. Rise: A Newsflesh Collection by Mira Grant
  10. After Dark by Haruki Murakami
  11. Midnight Robber by Nalo Hopkinson
  12. The Mothers by Brit Bennett
  13. Birdie by Tracey Lindberg
  14. A Tale for the Time Being by Ruth Ozeki
  15. A Safe Girl to Love by Casey Plett
  16. Let the Right One In by John Ajvide Lindqvist
  17. Feed (Newsflesh Trilogy, #1) by Mira Grant
  18. Shadows Cast By Stars by Catherine Knutsson
  19. Allegedly by Tiffany D. Jackson
  20. Hadriana in All My Dreams by René Depestre
  21. American Street by Ibi Zoboi
  22. Blackout (Newsflesh Trilogy, #3) by Mira Grant
  23. He Mele A Hilo by Ryka Aoki
  24. Holding Still For As Long As Possible by Zoe Whittall
  25. Blood Oranges by Kathleen Tierney
  26. The Shadow Speaker by Nnedi Okorafor
  27. The Dream of Perpetual Motion by Dexter Palmer
  28. A Wish After Midnight by Zetta Elliott
  29. Behold the Dreamers by Imbolo Mbue
  30. If I Was Your Girl by Meredith Russo
  31. Killer of Enemies (Killer of Enemies, #1) by Joseph Bruchac
  32. Deadline (Newsflesh Trilogy, #2) by Mira Grant
  33. One Day We’ll All Be Dead and None of This Will Matter by Scaachi Koul
  34. The Illegal by Lawrence Hill
  35. Discount Armageddon (InCryptid, #1) by Seanan McGuire
  36. Annabelle by Kathleen Winter
  37. Fellside by M.R. Carey
  38. The First Bad Man by Miranda July
  39. Faust Among Equals by Tom Holt
  40. Adam by Ariel Schrag

Got any recommendations for my 2018 list? Leave a comment!

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.