How Social Media Support Groups Enhance Patient Experience

Internet use and social media have become mainstays in everyday life, changing the way we interact with loved ones or entertain ourselves. But can the internet influence the patient experience? According to one research team, it could.

In a recent study, a team led by Matthias Alexander Kirch, MS, examined how cancer patients use the internet to collect health information, improve their patient engagement, and interact with other patients.

Kirch and colleagues found that internet use improves the patient experience. Following a survey of nearly 1,300 cancer patients at the University of Michigan Comprehensive Cancer Center, the researchers found that nearly 85 percent of patients have access to the internet and use it at least weekly. Of those patients, a majority reported a positive experience.

The researchers uncovered one group of users who have a notably more positive experience: patients who engage with other patients via social media or internet support groups. These patients – who either read other patients’ experiences, share their own, or both – are referred to by the researchers as “social producers,” and see many positive effects of internet use.

Beyond having an added layer of support from their internet-using peers, nearly 60 percent of social producers reported feeling reassured in their healthcare decisions and more empowered to ask their providers more detailed questions about their treatment plans.

Social producers also saw benefits when it came to their own individual healthcare research. While 67 percent of all surveyed patients reported using the internet for personal cancer research, over 80 percent of social producers said their research was useful or somewhat useful.

Kirch and colleagues explained that these results may indicate the internet’s best function. While it serves as a resource for a vast amount of health information, the internet’s best quality is its ability to connect individuals with shared experiences. In this case, it is cancer patients who are fighting similar illnesses.

“Social producers and patients engaged in formal support networks reported that the Internet provided them with the greatest social support as well as information about their diagnosis, suggesting that the real social benefits come from sharing personal experiences,” Kirch and colleagues reported.

The research team found that these kinds of social media habits are becoming more popular. While only 11 percent of patients reported belonging to a formal online support group, many more reported exchanges with their peers over alternative social media websites.

Twenty-one percent of respondents said they had read about other patient experiences online as a form of support, while 37 percent said they had also shared their own stories.

Understanding how to improve patient experience for cancer patients has proven a necessary task. Earlier this year, CancerCare released a survey showing that patient engagement and education has been left wanting in cancer care plans.

While the survey did find high patient satisfaction levels, it also revealed that patients lacked information about their treatment plans. CancerCare suggested that lacking patient-provider communication may be to blame, and that increasing these supports may be helpful.

While establishing a better relationship between the patient and the provider could help improve patient experience in cancer treatment, these new results from Kirch and his colleagues shows another avenue for improving patient care.

Going forward, providers may want to help their patients explore online support communities. In encouraging patients to seek out support online support groups, providers may potentially boost patient satisfaction and patient morale. All of this may culminate in whole-person care, rather than just the treatment of different illnesses or controlling of symptoms.

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