Every May the Lilly Trials team looks forward to the #WhyWeDoResearch Tweetfest as an opportunity to collaborate with folks from around the globe who are involved in clinical research—from patients and caregivers to researchers and site staff. The week-long event includes two to three tweet chats each day, all focused on different topics and hosted by a variety of individuals and organizations (we hosted a chat on caregiving last year). The chats are full of meaningful conversation, insights and ideas on the current state of clinical research and future opportunities for improvement (here's an example from @VickyLShepherd of the types of insights that can be gained from #whywedoresearch chats).
Take a look at the numbers from this year's Tweetfest*, which was held during the week of May 14, and included participants from 10 different countries:
*There was another #WhyWeDoResearch event unrelated to Tweetfest during this time period, which accounted for a portion of the impressions, tweets, participants, etc. captured above.
While many interesting and important themes emerged from the Tweetfest discussions, we're highlighting just a few of our favorites below.
1. Health Literacy: A Multifaceted Concept
We know that health literacy skills help people to feel empowered as patients, especially when it comes to asking about and understanding clinical trial opportunities. While the definition of health literacy may sound straightforward, it can actually be nuanced and have multiple components.
it's about expanding definition of health literacy beyond “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (National Library of Medicine) #whywedoresearch— Marie Ennis-O'Connor (@JBBC) May 15, 2018
Consider the idea of "health experience literacy"—extending the definition of health literacy to include an understanding for the actions that patients may potentially need or want to take as part of their health care experience.
I would go a step further than #healthliteracy. We must teach #healthexperienceliteracy. What to do after an appointment, how to coordinate care, get a 2nd opinion, how to find peer support groups, how to file a financial appeal, etc #whywedoresearch— Enlightening Results (@GraceCordovano) May 15, 2018
Or "research literacy"—honing in on clinical research-specific aspects of health care that are important for patients and caregivers to understand in order to make informed decisions about participation.
A final health literacy take-away focuses on the importance of the words used to talk about clinical research and begs the question: How can we as a community shift the way we speak about clinical trials to better convey the value of research to potential participants and their caregivers?
A2 I think it is about improving health literacy as others have mentioned, but also I think its about making research involvement and engagement less alien, making research itself sound less scary and some of that's about the language we use around research. #whywedoresearch— Linda Tinkler (@TinkleLin) May 15, 2018
2. Social Platforms: Many people turn to social media and online communities to learn about
clinical research, but each channel provides unique value to different people.
From the explosion of social media platforms and online patient communities emerged new and effective methods of not only learning about clinical research, but making connections with others who are going through similar health experiences.
While some Tweetfest participants cited Facebook as their go-to social media channel...
Yes absolutely, but it's all the more reason to advocate for complete transparency within patient Facebook groups. Moderators must ensure that the group members understand exactly WHY questions are being posed and HOW their responses will be used.#WhyWeDoResearch— MESM (@MESMGlobal) May 16, 2018
...others turn to Twitter as a resource of health information and support.
I'm not so keen on the Facebook support groups. I find them a bit depressing and that everyone moans. I think limiting the characters on Twitter helps restrict the moan element. My personal opinion. I know a lot of people find these groups helpful. #whywedoresearch— Rheumatoid Patient (@rheumpatient) May 14, 2018
We are fans of social media, of course, but the chat also uncovered some unintended consequences of social media content.
A2: I find when I see posts by arthritis charities of people with arthritis running to raise money for them, it makes me feel like I am then expected to be able to run as well. So it's a bit negative for me in that respect. #WhyWeDoResearch— Rheumatoid Patient (@rheumpatient) May 14, 2018
3. The #WhyWeDoResearch Campaign: A fantastic way to bring people from across the clinical
research community together to share ideas and discuss potential ways to improve clinical
One of the chats during this year's Tweetfest focused on the #WhyWeDoResearch event itself. During the chat participants shared their feedback on Tweetfest—what they liked, potential improvements, and, best of all, appreciation for one another. Here are a few highlights:
The #WhyWeDoResearch tweetfest has been amazing! Creates a real sense of research community that can connect, collaborate and share experiences - thank you to @smithhazelann for organising and to all those who are members of the #WhyWeDoResearch family for supporting! https://t.co/kT4xzOKUd1— Victoria Shepherd (@VickyLShepherd) May 18, 2018
This was our third year participating in tweetfest, and as always, we found the experience valuable, inspiring and fun. This year's topics were so great—we wanted to join them all! #whywedoresearch— Lilly Trials (@LillyTrials) May 18, 2018
Thank you to Hazel for hosting a wonderful Tweetfest event, and to each and every participant. We are always thankful for the opportunity to hear your insights and perspective on clinical research.