A ‘lifeline’ through the ‘hardest days’: Social media key in connecting patients, doctors
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To help bridge the gap between rheumatologists, patients and medical meetings, advocacy organizations put in immense amounts of effort to disseminate research and give some of the most crucial stakeholders a seat at the table.
And they are largely able to do this through social media.
According to advocates, social media platforms have been a boon in terms of access for everyone who is unable to attend academic or medical meetings, whether they are busy clinicians and researchers, or patients chronically ill with conditions such as fibromyalgia or rheumatoid arthritis.
This ease of access allows patient advocacy organizations, such as the Global Healthy Living Foundation and CreakyJoints, to identify pertinent research and spread it to those who are impacted by these diseases on a daily basis. Beyond that, social media allows marginalized and isolated patients a place to connect with providers and each other.
“We know that there are a lot of patients on various social media channels,” Joseph Coe, MPA, director of education and digital strategy at CreakyJoints and GLHF, told Healio. “We try to make sure we provide information in accessible ways in how patients want to consume it.”
‘I am so thankful for social media’
CreakyJoints, the digital arthritis organization — and part of the Global Healthy Living Foundation — maintains a robust presence across various social media platforms. With a strategy and voice tailored to each platform to better resonate with the users of those platforms, the goal is to meet patients where they are, according to Coe.
Each platform, be it Facebook, Twitter, Instagram, TikTok, or others, has a population of patients and physicians. Part of the challenge, Coe said, is understanding how audiences on various platforms will react to certain pieces of news and research.
“We look at all these platforms as a means to an end, and the end is to have patients feel better, engage with credible, educational information and foster closer relationships with their providers,” he added.
Social media has been an invaluable communication tool for patients with chronic diseases even before the COVID-19 pandemic. Online communities like the one that has developed on the CreakyJoints Twitter account can give patients a sense of community and understanding among their peers.
JP Summers, patient advocate and community outreach manager at CreakyJoints, found the community and the solace it provided shortly after receiving a diagnosis of fibromyalgia.
“I am so thankful for social media because it has been a lifeline for me through some of my hardest days,” Summers told Healio. “Even before COVID, we had this community, so it was nothing new for us. We embraced it and each other more after COVID.”
Aside from the community aspects of social media, CreakyJoints and other advocacy groups also work to make patient resources widely available.
“I try to follow as many advocacy groups as I can, both to learn more about the patient perspective and to stay up-to-date on research that they are sharing, whether it’s disease specific or related to another opportunity for advocacy,” Kristen Young, DO, a clinical assistant professor of medicine at the University of Arizona College of Medicine, in Phoenix, told Healio.
‘Patient translators’
Academic meetings offer providers and researchers a chance to gather and discuss the most recent research findings and problems facing medicine. However, another integral part of these meetings is the presence of, and hearing input from, patient representatives.
“I value the patient advocates at academic meetings, as they often bring a different perspective to discussions,” Young said.
CreakyJoints furthers this mission by sponsoring patient research for presentation at major rheumatology meetings, such as the annual American College of Rheumatology Convergence. Following the 2022 meeting, staff and presenters broke new ground by posting patient presentations of new research on TikTok, Coe said. In addition, CreakyJoints trains volunteers to get involved by becoming patient-reporters.
“We have trained patients to become patient-reporters and disseminators of that information,” Coe said.
Summers took on the role of patient reporter for the 2022 ACR Convergence meeting, and although she could not attend the meeting in person, social media and online infrastructure allowed her to take an active role in keeping her community informed, she said. Getting involved in that way was a learning experience in more ways than one, Summers added, stating that it highlighted how much work is required to make research digestible for the lay-person.
According to Summers, social media is the only means some patients have of participating in the outside world.
“We view our role as being patient translators — being able to take this complex information and distill it into a tweet to help empower patients to make better decisions and help them become better informed about their disease and care,” Coe said.
‘It takes a huge team’
No matter the meeting or the attendees, social media ensures the infrastructure exists to reach as many patients as possible in a way they can most easily digest.
However, making sure that information finds its audience — and cuts through all of the disinformation — can be a daunting task
“It takes a huge team of people to put together everything,” Summers said. “Getting to see the bigger picture, how content is shared on social media, it just amazes me how dedicated my colleagues are.”
Despite its myriad potential drawbacks, for the advocates working with CreakyJoints, social media is the clear option for getting cutting-edge research to the patients who might be able to appreciate it on a personal level.
“There are mixed reviews whether social media is effective for disseminating research,” Young said. “I have found it to be effective, and I enjoy receiving direct feedback on social media about my research.”
For patients, meanwhile, social media’s use as a tool for finding research, whether it originated at a meeting or in a scientific journal, can be invaluable.
“Social media has been probably the best way to get the information out there,” Summers said.
Every day, patients are diagnosed with conditions that have the power to change their lives. Many of those patients may respond the same way Summers did upon receiving her fibromyalgia diagnosis — by taking to social media.
“The vast majority of people living with chronic disease will never make it to a medical conference, and there is a lot of really important research shared at these medical conferences that could inform their future care,” Coe said.
Although many of these patients may never step foot in a physical conference, the digital world of social media offers a way for the information shared there to be digested and made useful by anyone with an internet connection, Young said.
“Social media is an important avenue to disseminate research for both lay groups and advocacy groups,” Young said. “The amount of people using different avenues of social media is significant, and most importantly it is a free opportunity to disseminate research.”
Although social media can be useful for reaching groups of people with chronic illnesses, its utility extends beyond simply sharing research papers or poster presentations.
Worlds collide
Since joining CreakyJoints and the Global Healthy Living Foundation in 2022, Summers has noted a clear upswing in the sheer volume of communication between patients with chronic diseases and providers, she said. These interactions often provide two outcomes.
The first outcome, spawned by increased communication, involves building bridges and the foundational construction of relationships between providers and patients. On a simpler level, when providers chime into conversations among patients, those patients often feel validated in ways that may be difficult to replicate with their own providers.
“There is nothing better than seeing the interaction between the medical providers and the patients — I would love to see more of that,” Summers said.
On the other side, discussing issues with patients gives providers the opportunity to engage in discussions that may prove difficult to broach in a clinical setting.
“As a patient and physician, I sometimes share my experiences as both, so I also appreciate when patients share their experiences — both good and bad,” Young said.
Doctors are not, however, able to discuss specifics with patients on these networks. “General questions about diseases, research implications, and advances in their disease-specific treatment are always welcome,” Young added.
One of the ways CreakyJoints has fostered communication is through the creation and regular occurrence of the hashtag #CreakyChats on Twitter. These are monthly conversations hosted by Global Healthy Living Foundation staff that often feature guest physicians or representatives from partner advocacy groups for additional perspective. With different monthly themes, the intent is to broach the questions that many patients with chronic rheumatic diseases face, from the slightly innocuous to the deep and complex.
The chats began when CreakyJoints staff noticed there were regular conversations happening on Twitter between providers and patients with chronic illness, Coe said. Since their inception, the popularity of, and participation in, these chats have grown exponentially.
According to Summers, the chats offer a place for patients who may feel uncomfortable discussing their illnesses in daily life for fear of judgment or awkward conversations. They enable patients to connect with other people going through similar circumstances, he added.
“There are so many people that look forward to those,” Summers said. “It is something I was very thankful to join and, to this day, be a part of.”
Next steps
According to Young, the future of chronic illnesses and the relationship between social media, advocacy organizations and medical meetings may be nebulous and in flux for the foreseeable future, but there are tangible steps groups can take to foster connection between stakeholders.
These next steps will likely require advocacy groups and providers alike to ensure they each have a seat at the table.
“Open communication and valuing the important perspectives each of us contribute [is important],” Young said. “Patients are so valuable when it comes to clinical research. Invite them, and pay them, to be a part of your study design.”
For now, though, these groups continue to push for the successful management of their current missions.
“Any way a patient can access information is important, and we need to provide different mediums and mechanisms for people living with chronic diseases to absorb and take in information,” Coe said. “We need to make sure that we are providing relevant, culturally competent and factually sound information to the patients that need it most.”
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