The views expressed in this post are mine and mine alone and do not necessarily reflect those of any of my current or past employers.
I recently wrote about how hard it is to communicate about cancer, if you are a patient, doctor, caregiver or even a professional communicator. The topic is difficult, the terminology is confusing, patients can get “chemo brain” and have problems processing information. And still in many cases, people don’t talk about cancer freely – at all.
What has helped millions of cancer patients is the rise of online social interaction as a way to gather and exchange information and offer support. And note that I wrote “social interaction,” and not “social media.” Social media are simply the tools; social interaction is where the magic of cancer patient communities happens.
The Thread That Binds are Hashtags
While Facebook is still a viable option, Twitter has become the platform of choice for cancer patients, their loved ones and medical professionals for community building. All of this came about because of one little invention: a hashtag. A hashtag is the common thread that enables people to be part of the same conversation, putting themselves squarely into the discussion stream.
In the Wild West days of hashtags, though, people could make up any sort of hashtag they wanted. Breast cancer could be #breastcancer or #BCSM or a multitude of derivations. The more hashtags there were for the same disease, the more diluted the communities got – and harder it became to be part of unified community.
As Thomas Lee said on this website all the way back in 2010:
“…We all know how healthcare loves to use abbreviations, technical jargon, and even use different terminology that essentially all means the same thing. Now lay on top of that the fact that Twitter hashtags are home-grown, without any rules, and without informing the rest of the healthcare community on Twitter what exactly your chosen hashtag means. Take all these issues, stir them up in a pot and healthcare hashtags often become more like mishmash-tags.
The Healthcare Hashtag Project
Enter the Healthcare Hashtag Project (HHP). In 2010, the HHP set out to develop a unified set of hashtags for diseases, conferences, Twitter chats, ontologies and more. This would help patients, physicians, caregivers and others to congregate online in one place, increasing the reach, power and scope of the communities. So rather than #breastcancer or #bcancer or any other derivation, the most widely recognized hashtag for breast cancer is now #BCSM – Breast Cancer Social Media – thanks to the work of those who standardized it and worked so hard to build the communities.
These commonly used hashtags have gone well-beyond simple tweets; #BCSM went from a hashtag to a movement, including a web site, a blog, and a vibrant Twitter chat that takes place every Monday evening for an hour beginning at 9 pm Eastern time. The same is true for lung cancer: #LCSM (Lung Cancer Social Media) has a web site, is a vibrant online community, and #LCSMChat is a Twitter chat every that occurs every other Thursday at 8 PM Eastern time. There are hundreds more cancer-specific hashtags and accompanying online communities.
Twitter is Scientifically Validated
As a veteran of the “does online work for organizations?” wars since 1997 and someone with a personal interest in patient communities, I can tell you that some in the oncology world still think that Twitter is something that only your kids do or where people post pictures of their cats. While that can be true, the oncology profession has finally begun to give Twitter its due.
On March 3, 2016, JAMA Oncology released the results of a study in a paper called “Cancer Communication in the Social Media Age.” Its authors analyzed 26,059 tweets containing “lung cancer” from January 5 to 21, 2015. While the results are preliminary, the study found that:
“Most of the lung cancer-related tweets focused on support (28.4% [358 of 1260]) or prevention (28.3% [357 of 1260]) and were authored by individuals… We found that 17.5% of the tweets in our sample (221 of 1260) were related to clinical trials, most authored by individuals.”
Its authors also noted:
“Social media is a rich and promising avenue for exploring how patients conceptualize and communicate about their specific health issues…”
And the JAMA Oncology article is not presenting anything necessarily brand new. At the American Society of Clinical Oncology’s annual meeting in 2015, Dr. Matthew Katz presented a poster based upon research done with the Healthcare Hashtag Project, postulating:
“… disease-specific cancer hashtags may be a way to access accurate health information and positive interactions.”
This well-received poster presented data from 531,765 tweets coming from over 70,000 users. That is a significant amount of data and also points to the irrevocable fact that, as shown in the JAMA Oncology, Twitter is not a passing fancy in the cancer community.
The Next Steps for Twitter and Clinical Trials
I’ll let Wall Street determine Twitter’s financial outlook and future, but for the world of cancer and Twitter, it’s time to take it to the next step: helping increase the tragically low accrual rates in clinical trials. JAMA noted:
“Effective use of Twitter might be one way to communicate with the public about cancer clinical trials and increase awareness and enrollment.”
Just as some of the world’s leading doctors are now focusing on the President’s “Cancer Moonshot” and precision medicine, I dream of the day in which these wonderful online communities can partner with medical institutions to make more people aware of the availability and potential benefits of cancer clinical trials.
Doctors running clinical trials need patients. Patients at all phases of treatment may be right for a clinical trial.
The communities have been built. They have established permanency in the world of cancer and Twitter. How brilliant would it be to have a session at AACR or ASCO this year in which the online patient community leaders, oncologists, patient advocates and researchers all talked about concrete ways to align forces and make Twitter part and parcel to solve the accrual problem that has plagued the medical community for more than 30 years?
It’s time to take the next step, and as so many have said recently, break down silos and get the right clinical trial information to the right people at the right time.
We’re off to a great start. Let’s seal the deal.