Blogged While: Listening to my dog Gypsy dream about Jon Snow
In case you missed it, last week the Coalition for Clinical Trials Awareness, along with key sponsors, hosted the second annual Clinical Trials Awareness Week. The 5-day event was observed on social media with #CTAW2016 and included a variety of online and offline initiatives (like this GREAT video comparing current national awareness for clinical trial participation to that of organ donation, cancer screenings, and polio vaccination) and culminated with a tweetchat on Thursday the 5th. During the tweetchat, @PhRMA posed a series of conversation-generating questions to an audience of non-profit organizations, physicians, industry professionals, and most importantly, the patients, caregivers, & advocates whose awareness-raising efforts consist of first- and second-hand accounts of the impact clinical trials have had on their lives.
As a social media research manager in healthcare, naturally I was eager to see how this crucial awareness initiative would be executed and embraced by the online healthcare community. Throughout the 5 days, #CTAW2016 generated over 2,500 tweets from over 100 individual participants representing over 50 disease categories – not too shabby for an event in just its second year! So what were my key learnings from the week?
- Typically underserved & rare disease populations dominated the conversation.
Outside of general references to “cancer” research, the top disease states discussed during #CTAW2016 were Alzheimer’s Disease, “Rare Disease,” and Cystic Fibrosis, along with some engagement by patients & non-profits for Lupus, HIV, and Parkinson’s Disease. Stakeholders in these disease communities elevated the importance of dedicating research efforts – and dollars – to communities which are oftentimes forgotten or overlooked by the public, using #CTAW2016 to raise awareness for their community by engaging in a popular, broad healthcare topic.
How did these communities ‘get loud’ enough to dominate the Clinical Trial Awareness Week buzz last week you ask? Influencers. It’s no wonder that the Parkinson’s community saw engagement from a variety of patients & caregivers, when we consider that the Michael J. Fox Foundation tweeted throughout the week to their 70,000+ followers. The Lupus community saw representation from a patient advocate with 10,000+ followers, and Cystic Fibrosis achieved a notable spotlight during the initiative thanks to participation by the CF Foundation in Friday’s round table event, as well as a caregiver-advocate whose CF-related tweets were widely retweeted by the event’s broader audience. Similarly, although Breast Cancer and Lung Cancer were not explicit topics of conversation during the tweetchat, prominent patient advocates’ activity during #CTAW2016 transferred some trial chatter to the #BCSM and #LCSM communities. #CTAW2016 reinforced the fact that partnerships and engagement with prominent patient & advocacy voices are crucial for mobilizing a disease community around any initiative.
- Clinical trial myths need some serious busting.
@PhRMA’s tweetchat on Thursday consisted of a 5-topic Q&A session which encouraged audience participation around a variety of topics, one of which addressed misconceptions about participating in clinical trials. Many of the myths addressed the idea that trial participants are “guinea pigs” trying “untested” treatments, paired with worries that patients may enroll only to be given a “placebo.” Myths like these sparked discussion around the drug development process which requires several years of rigorous pre-clinical testing before any human trials begin, as well as the truth that participants are valued and celebrated partners contributing to crucial medical advances.
One of the more interesting myths that I felt exposes the need for greater public awareness – and supports the CCTA’s call for a government-sponsored public awareness movement – was the misconception that individuals must be sick to participate. Much like the “Donate Life” movement works to encourage healthy organ donor registrations, many clinical trials need healthy volunteers, yet it seems that no one thinks about clinical trials until they or someone they love is in need of new and innovative treatment for an illness. This point brings me to one last clinical trial myth: trials are a last resort.
It’s a dynamic we as research analysts come across time and time again: the clinical trial conversation (both between doctors and their patients and between patients in online forums and on Twitter) seems to happen late in the game; clinical trials are often seen as a last resort or an option to save until the patient has already exhausted all other options. Proponents of increased clinical trial awareness urge that when possible, trials should be considered earlier on in a disease journey so patients can reap the full benefits of a potentially efficacious and tolerable treatment rather than enduring rounds of less effective and harsher agents.
- Social media is an invaluable channel through which some of the most engaged and proactive patient populations can be reached.
Yes, I am biased. However – the most popular topic during @PhRMA’s tweetchat was Q2: “How can we continue building awareness around #clinicaltrials & their benefits?” A lexical analysis of the responses to this question revealed a few key themes: Patient Voices. Collaboration. Communities. Plain Language. This question brought up a topic that is near and dear to my heart – the use of social media to harness the positive and supportive communities that patients, caregivers, physicians, and non-profits are developing and engaging in to educate populations of potential participants who are already taking an active role in their care by seeking support and advice online.
Early engagement with online healthcare communities can help identify potential barriers as well as motivators, ensure trial materials be written in language that will be understandable to a lay audience, and help to provide the right content to the right audience, at the right time. In the same way that community influencers are mobilizing their audiences to take part in initiatives like #CTAW2016, those thought leaders can be pioneers in leading their communities to seek clinical trial participation. Just one example of how trial sponsors are already harnessing online influencers’ broad but targeted social reach is through CureClick, the world’s first crowdsharing platform that activates health influencers to accelerate clinical trial awareness, advocacy, and recruitment. Similar, less structured chains of influence are taking place every day in every online healthcare community when patients share their stories to empower each other in their healthcare journeys.
Overall, year 2 of Clinical Trial Awareness Week was a major success in generating quality clinical trial buzz from a variety of key stakeholders. My hope is that the conversation around the importance of clinical trial awareness and participation goes beyond last week’s hashtag and into government and doctors’ offices and homes alike.
- Briana Pereira