As an open forum for human interaction, social media have become the great equalizer of health information – providing a means for patients and health care providers to connect outside of the hospital or local clinic setting and learn from one another.
No longer a static “read-only Web,” the Internet provides a space for dynamic interactions between users. Individuals can create, post, and share content relevant to them through individual and collective blogs (e.g. the Mighty); microblogs (e.g. Twitter); social networking sites (e.g., Facebook, LinkedIn, Inspire, and Patients Like Me); video, podcasts, and other file-sharing platforms (e.g. YouTube); e-gaming; and wikis. For health care consumers – patients and caregivers – this new, participatory Internet set the stage for a health revolution. Over the last decade, the interaction-driven landscape of Web 2.0 has changed how health and health care are understood and navigated. Able to obtain and share health information, engage with clinicians and health care institutions, and, importantly, connect with others with similar illness experiences, patients and caregivers now have the tools to be more informed, connected, and proactive health care consumers than ever before.]
But patients and caregivers aren’t the only ones benefiting from an interactive, and highly social, Internet. Up to 65% of researchers and health care providers are estimated to actively use social media for professional purposes, such as social networking, professional development, and coverage of medical meetings. It’s now common practice for meetings and courses to have their own hashtag, and many have relaxed rules against photography to facilitate slide-sharing on social media. It has even been suggested that within then next decade, medical professionals will not be able to be successful scholars without some activity on social media.
This widespread adoption of social media truly marks a redefinition of how patients and providers obtain information and make connections in the information era.
While many providers readily recognize the value of social media in augmenting their professional activities, far fewer are comfortable using social media to interact with the patient community. Concerns about the spread of medical misinformation, breaches of professional boundaries, and risks to patient-sensitive information dominate the debate. These concerns have even led to the establishment of guidelines on social media use by health care institutions and professional societies, including the American Medical Association (AMA) and the American College of Physicians and the Federation of State Medical Boards (ACP-FSMB).
But despite concerns of misuse, social media can improve how medical care is performed and received, offering new opportunities for both patients and providers to connect and learn. While the potential benefits of social media in health care are many, the following are a selection of examples of how social media can enhance patient-provider communication, give voice to the patient perspective, and, ultimately, lead to better outcomes.
Social Media Provide Patients and Caregivers with Emotional Support
A 2012 survey from the PricewaterhouseCoopers (PwC) Health Research Institute found that one-third of people actively use social media for health-related matters, with 25% having posted about their health experience online and 20% having joined a health forum or online community. Adding to this, the Health Online 2013 research survey from Pew Research Center’s Internet and American Life Project found that among those looking for health information online in the last year, 18% actively searched for others who might share the same health concerns and 26% read or watched someone else’s account of their health experiences or medical issues on social media.
At that time, 60% of Americans regularly used some type of social media. Since then, that percentage has risen to 69% of the population, and reflects, among other factors, the growing adoption of social media by older adults.
Having stable social support has long been understood to improve health outcomes for patients. But, for those affected by a chronic illness, the ability to share illness-related experiences with others who face similar challenges online offers additional benefits. While 18% of the population have searched online for others who might have similar health concerns, this percentage goes up to 23% for Internet users living with a chronic illness or rare disease. With social media, patients are no longer constrained by their localized community but can connect with others around the world, establishing meaningful relationships, sharing information and advice, and building communities of support. These benefits have been found to be particularly important among those with poorer health status, those who experience illness stigmatization or trivialization, and/or those who are isolated or disconnected from traditional support.
Social media offer new ways to build social networks, connecting patients and caregivers with others with similar illness experiences and fostering emotional support.
Social Media Lead to More Equal Communication Between Patients and Providers
Not so long ago, the divide between the health care provider and the health care seeker was absolute – fixed in place and enforced by the localized office visit.
But social media are changing this.
By literally taking away the walls of the patient-provider interaction, social media have changed how patients and providers communicate and relate to one another, upending the traditional patient-provider dynamic and empowering patients to take a more active role in their care.
A recent review of over 1,000 journal articles on the use of social media by patients for health-related reasons found that social media use by patients can lead to more equal communication between patients and providers – an outcome stemming from a heightened feeling of confidence on the part of the patient regarding his or her relationship with their provider. By increasing patients’ confidence in how they communicate with their providers, social media democratizes the decision-making process, empowering patients to become involved in key decisions relating to their care. This may even serve to encourage patient adherence to their treatment plans, improve patient satisfaction with the care they receive , and increase patient willingness to seek medical attention.
Social Media Help Providers Better Understand the Patient Perspective
Clinical research has not only become more patient-centered, it’s become increasingly patient-driven. The experiences and perspectives of patients and caregivers are playing an increasingly central role in informing and shaping research aims and practices. This is evident in the implementation of patient-reported outcome (PRO) measures in clinical trials and increasing efforts to engage patients and caregivers in study design, drug approval, and health policy decisions.
This is also true in clinical practice. Insights gathered from patients and caregivers have been used to make hospitals and other centers of care more patient-friendly, identify and address disparities in access to care, and shape the patient-provider interaction.
While the available literature on the role of social media in promoting information-sharing in health care addresses patient-to-patient, provider-to-provider, and provider-to-patient learning, notably absent is the potential for the transmission of information from patients to providers.
Health care professionals and institutions can learn a lot from patients and caregivers. And, social media can help facilitate this learning. Patient and caregiver accounts of their illness-related experiences and needs on social media can help providers and health care institutions better understand their patients and use this knowledge to develop solutions that improve outcomes. As gastroparesis patient advocate @melissarvh tweeted, “It’s (patient presence on social media) underutilized by researchers, medical professionals, pharma, & others. We are a significant resource & you all are thinking too small by dismissing our value to you. 20,000 patients in my #Gastroparesis group, all waiting to be heard.” She goes on to tweet, “Those involved w/ our care need to see our struggles and learn from us. Both parties would benefit.”
Gastroparesis is a chronic digestive condition characterized by the presence of symptoms that persist or reoccur long-term together with slowed emptying of the stomach. While up to five million people are estimated to live with gastroparesis in the United States, the condition remains little-known, and those affected often face significant diagnostic delays.
In recognition of Gastroparesis Awareness Month 2018, the International Foundation for Gastrointestinal Disorders (IFFGD), a patient-driven non-profit education and research organization, launched a campaign on Twitter to raise awareness and elevate the experiences and needs of patients and caregivers using #HearMeGP. During August, patients and caregivers, other patient organizations and professional societies, treatment manufacturers and e-health companies, professional journals, health care institutions, and providers all tweeted with #HearMeGP. Participants shared facts about gastroparesis, videos and blogs documenting their personal experiences with the disease, messages of support and encouragement, and held discussions about their hopes for the future of gastroparesis treatment and care. The campaign reached almost 300,000 accounts and earned more than one million impressions.
As a gathering place for people who share similar illness experiences, social media can help give voice to the suffering experienced by patients. Patients are coming together to share their lived experiences and needs. As a wellspring of patient insights into the experience of disease, social media can help providers and health care institutions understand the unmet needs of chronic illness patients and their caregivers and work towards solutions. #HearMeGP, and campaigns like it, illustrate how patients and caregivers, providers, and others, can come together on social media to make their perspectives heard and build a connected and informed stakeholder community.
While social media hold certain pitfalls, their ability to bridge traditional divides in medicine and encourage information-sharing between patients and providers has changed the understanding and delivery of health and health care. Access to new avenues of information and support has emboldened patients and caregivers to take charge of their own care and wellbeing, working in partnership with their providers. And, in addition to offering opportunities to connect with other health care professionals, patient demands on social media to be heard are challenging providers and health care institutions to improve how they engage with patients both online and in person. In the end, we get a more informed and connected community of patients and providers learning from each other, strengthening relationships, and ultimately, improving outcomes. As concluded by Wald et al. (2007), “Collaborative teamwork between physician and patient might just lead to a genuine partnership, improving the quality of health care and engendering a more trusting physician-patient relationship. Might be worth a try.”
About the IFFGD
The International Foundation for Gastrointestinal Disorders (IFFGD) is a registered 501(c)(3) nonprofit education and research organization dedicated to improving the lives of people affected by chronic gastrointestinal (GI) illnesses. Founded in 1991, IFFGD helps improve patient outcomes by enhancing awareness, improving education, and supporting and encouraging research into treatments and cures for chronic GI disorders.
Got to iffgd.org for more information.