The rise of social media in our society has been nothing short of phenomenal. It’s hard to believe that Facebook has been with us for over a decade now and boasts more than a billion and a half users, of all generations, worldwide.

Social media — electronic communication and online channels that allow for the creation and exchange of user-generated content — have become much more than a way for friends and family to share personal experiences. Today, most businesses have embraced blogging and social networking sites such as Twitter and Facebook to connect with their customers, partners and employees.

Social media also are transforming the nature of health care interactions. With greater emphasis placed on patient engagement as we move from the sick-care model to one of prevention and wellness, timely access to credible health information is essential to the health system. In addition, patients and family members who share disease and treatment experiences can play an important role in achieving better patient and population health outcomes.

As social media and their applications in health care continue to evolve, it’s worth taking a snapshot of where we are today and where we may be headed.

What’s that little red bump on my leg?

Not surprisingly, it’s estimated that between 70 percent and 75 percent of Internet users in the United States seek health care information online, whether researching a possible diagnosis for themselves or others, a recommendation for a clinician or other information. Additionally, a 2012 PwC study found that one-third of consumers use online forums and social media sites such as Facebook, Twitter and YouTube for health-related matters.

Social media are proving to be a tremendous asset for providers and other industry participants to listen to and engage with patients beyond the clinical setting. In fact, health care’s adoption of such platforms is growing. According to a 2014 study in the Journal of Medical Internet Research, nearly 95 percent of hospitals had a Facebook page and just over 50 percent had a Twitter account. A similar study found just 21 percent of hospitals used social media in 2010, with 18 percent operating a Facebook account and 16 percent operating a Twitter account.

Whether via Twitter, Facebook or other platforms, today’s providers are using social media to disseminate information on everything from emergency department wait times to new clinical offerings and research endeavors.

With such a wealth of information available, health care consumers can customize their social media experience to include a mix of news channels most relevant to them and “follow” just about anyone in health care — from local providers to nationally renowned clinics and favorite medical personalities.

Beyond access to information

While health care consumers are certainly contributing to the rising volume of online activity that has become a staple in our society, social media’s impact on health care is yet to be fully understood as there are very few studies measuring its effectiveness. However, we know social media’s application in health care extends well beyond improving access to information and enhancing communication between patients and providers.

For example, with an abundance of patient-generated health information now available through online patient communities, social media can play a vital role in improving our understanding of disease and accelerating new approaches to treatment.

Consider the following ways patient and consumer use of social media is benefiting health care:

Creating a sense of community: For those seeking emotional support and tips for coping with a disease, social media deliver on many fronts. Social media can enable the formation of communities regardless of member locations and allow members to communicate asynchronously.

Sites such as PatientsLikeMe and Inspire provide virtual medical communities focused on chronic diseases where patients can discuss their conditions, track key health information, share side effects of medications and therapies and bond with others as they chronicle the highs and lows of their health care journeys.

In fact, a 2014 survey of PatientsLikeMe members found that the vast majority of adult social media users with health conditions embrace the idea of sharing their health information online if it helps clinicians improve care, assists other patients or advances medical research.

Users of online health communities also frequently cite as reasons for their membership the accountability the sites provide them in managing their own health and reaching their health-related goals, as well as the motivation, support and advice they receive from others. Online communities can also lessen the feeling of isolation that often accompanies those who have rare conditions or who are the parents of a critically ill child.

Additionally, use of these sites is growing. For example, while PatientsLikeMe was originally founded to support patients with amyotrophic lateral sclerosis, it opened to people with all diseases in 2011. Today the network boasts more than 400,000 members — triple the number of users it had in 2011 — who have been diagnosed with more than 2,500 conditions and logged more than 31 million data points about disease.

Delivering new clinical research insights: As more and more patients use social media to track their health conditions and actively participate in their care, there is a greater opportunity to use this real-world data to better inform new treatments and treatment decisions, enhance symptom management and ultimately improve outcomes.

For example, in analyzing the results of observational data housed on PatientsLikeMe, researchers found that lithium therapy had no impact on ALS disease progression, which was later confirmed by subsequent randomized trials.

Although PatientsLikeMe began as a social network enabling people to crowdsource the collective wisdom of others, it has developed into a powerful analytical platform for clinicians and researchers. In fact, the network is quite transparent with its members about how it makes money — by sharing the information members provide about their experience with diseases and selling it to PatientsLikeMe's partners (companies that are developing or selling products to patients). End products may include drugs, devices, equipment, insurance or medical services.

In addition to helping patients find and take advantage of clinical trials, health care social networks also provide an opportunity for participant-led research, in which members initiate new fields of study. For instance, Inspire members with spontaneous coronary artery dissection persuaded researchers at the Mayo Clinic to launch new research into the condition, which led to the creation of a SCAD registry, a key step in the further study of this rare disease.

Indeed, there is tremendous potential for online patient communities to contribute to the project of a continuously learning health system.

Building awareness of causes or personal health care crises: Social media can serve as the birthplace for beneficial social movements, as well as hubs for galvanizing emotional and financial support for a personal health care crisis.

The ALS Ice Bucket Challenge is a terrific example of social media’s power to deliver both on fundraising and on the equally important goal of helping the public become more aware of ALS and efforts to find a cure.

The simple act of pouring ice on one’s head, capturing it on video and calling out another person to do the same spread across social media channels like wildfire a few years ago. With everyone from schoolchildren to celebrities getting in on the act, the ALS Association raised $115 million in 2014, a staggering increase from its $23.5 million intake in 2013.

On a smaller scale, sites such as GoFundMe and My Cancer Circle can help keep family and friends abreast of a loved one’s illness and treatment status, provide tools to coordinate meal deliveries and rides to medical appointments and enable financial contributions to help offset personal health care expenses.

Providing assistance with treatment, physician or hospital selection: While physician-rating sites have been around for years, social media have given health care consumers a more active voice and an ever-present tool set for broadcasting opinions on all things health care-related — from physicians and hospitals to medications, devices and insurance plans.

Like it or not, social media are proving to be vehicles that can help scale both positive and negative attitudes about one’s health care experience at Internet speed. In fact, a 2012 survey by Demi & Cooper Advertising and DC Interactive found that 41 percent of people said social media would affect their choice of a specific doctor, hospital or medical facility.

Of course, the downside is that the negative opinions of a vocal minority can lead to an unjustly sullied reputation.

With the viewpoints of those in online social networks playing such a key role in influencing health care decisions, providers ought to ensure they are optimizing their social media channels and actively participating in helping consumers share positive opinions online.

Complementing traditional approaches to measuring patient satisfaction: Beyond just randomly monitoring opinions shared on social media, savvy providers may want to turn to social media to supplement traditional means of capturing patient satisfaction and feedback on inpatient experience. 

In fact, researchers at Boston Children’s Hospital conducted a study to determine if Twitter could provide a reasonable form of complementary quality measurement given the real-time nature of tweets. The team amassed unsolicited knowledge (versus data gleaned from targeted survey questions) about what pleased or angered consumers by collecting more than 400,000 tweets directed at the Twitter handles of nearly 2,400 U.S. hospitals between 2012 and 2013.

According to the researchers, the data are suggestive, and even though they're no replacement for the results of patient satisfaction surveys, they provide proof of principle that Twitter and the right analytical tools may provide a valuable complement to standard approaches of measuring quality. Moreover, the ability to correlate social media data points such as tweets with actual outcome measures (e.g., patient length of stay in the emergency department or readmission rates) provides an interesting avenue for further exploration.

And now, the 'but' ...

For all the good that can come from patients and health care consumers using social media, there are also risks and challenges.

For one, it can be difficult to control the quality of information shared on patient social networks, creating a legitimate concern about dissemination of inaccurate information.

While online patient communities do not generally fact check or alter user commentary, most make it clear where content arises from — medical professionals or accredited sources versus fellow patients. However, any shared patient anecdote that contains faulty medical information can be absorbed by the masses, with potentially dangerous consequences.

Equally troubling to health care providers is the “over-empowered” patient, whose use of online sources can lead to misinterpretation of information and inaccurate self-diagnosis.

Additionally, in a heavily regulated industry like health care, privacy and security concerns about sharing health information online abound. Although reputable sites take great care to protect the privacy and security of information shared by users, in today’s world of sophisticated hacking schemes and other cybercrimes, privacy can never be guaranteed. Threats to the security of patient data shared through social media range from HIPAA violations to identity theft to possible discrimination by employers or insurers and should be taken very seriously.

A promising future

There’s no denying that online social networks can nurture patient engagement, establish communities of support and foster effective communication between patients, doctors and researchers.

However, as consumers increasingly rely on social media to help them select providers, manage their own health and determine treatment options, not much is known about the effect on actual patient outcomes. This is an area ripe for further investigation.

Ultimately, the industry as a whole will benefit when we better understand how social media can support patient-centered care initiatives in innovative and effective ways — ways that will help improve both individual and public health outcomes.

As we know, a credible tweet from the Centers for Disease Control and Prevention about the Zika virus can spread faster than the virus itself. Likewise, the potential certainly exists for online patient communities to help streamline the lengthy process of translating clinical research into evidence-based practice. And might providers one day use social media data points to predict patient behavior and alter interventions and treatment plans accordingly? Probably so, and it will be fascinating to read these sorts of outcome-based studies.

The future holds great promise and untapped potential for patient and consumer use of social media in health care. The onus is on all of us to put its tremendous power and reach to the best use possible. 

John Glaser, Ph.D., is the senior vice president of population health and global strategy with Cerner in Kansas City, Mo. He is also a regular contributor to H&HN Daily.