COPD patients use social media channels to share and find specific information about their disease and treatments. YouTube is a popular social media channel used by patients as an educational source of information such as breathing exercises, using and cleaning nebulizers and different treatment plans. Facebook and Twitter platforms serve as online discussion forums to share experiences with other COPD patients on treatment plans including medication, diagnosis, insurance plans that cover COPD, inhalers, and nebulizers.
OVERVIEW OF COPD PATIENT SOCIAL MEDIA CHANNELS
- Results in a 2013 Pew Research Center report indicate that of the 85% of adults in the United States who use the Internet, 72% (or about 61% of all U.S. adults) reported using it to find information about their health.
- As per a survey article published in the Journal of the COPD Foundation, COPD patients that responded to the online survey reported that physicians were the first source of information, along with internet searches for information.
- This group further reported that their online searches for COPD information focused on 2 areas: “specific information about COPD” and “treatments for the disease.”
- Social media sites are increasingly used to share medical information. An estimated 58% of all American adults use Facebook. One example of a patient-focused online community is PatientsLikeMe.com, featuring over 400,000 members; the site enables patients to network and exchange disease-related information (as of February 1, 2016, the site supported 2,348 patients with COPD).
- There was a survey done on social media listening to obtain patients’ perspectives on symptoms, diagnosis and other morbidities associated with COPD and its impact on patient quality of life.
- Based on the posts by patients or patient caregivers, cough, mucus and dyspnoea are the most frequently discussed symptoms on social media by patients with COPD.
- Patients actively discussed lifestyle changes online. Quitting smoking was the most discussed lifestyle change. Other lifestyle changes included physical and breathing exercises, dietary modifications, monitoring air quality and receipt of flu shots.
- Patients post symptoms and their severity of COPD online after diagnosis; they actively share experiences on forums and appear to seek information using various social media channels.
- Most patients reported quitting smoking and adaptation of dietary modifications and exercise after the diagnosis; some patients advocated continued pulmonary rehabilitation in addition to standard treatment for better disease management, mentioning prevention of exacerbation and improvements in lung function.
- Patients with COPD spread awareness on social media and tend to recommend that newly diagnosed patients reach out to support groups for information.
- As per a survey, there were 223 videos in 2014 on patient education for Chronic obstructive pulmonary disease (COPD).
- The American Lung Association provides videos listed under “Patient Resources” including the following major topics: breathing exercises such as (pursed lip breathing, belly breathing), and how to use and clean a nebulizer.
- To reduce readmission for COPD patients, a healthcare provider invested in an educational plan that included patient education videos on COPD disease and other related topics. Patient readmission dropped by 29% illustrating that patients utilized these type of videos on their treatment plans, medication, etc.
- As per a research study, it was identified that there is a need for better education related to inhaler devices.
- Many patients were not getting an adequate amount of education from their healthcare practitioner about how to use their inhaler device.
- Because some COPD-related issues were not met at the physician’s office, there is a potential search requirement for patients to turn to required educational videos from healthcare providers that would support proper nebulizer selection and use in COPD management.
- COPD patients tend to search for information on breathing exercises and treatments.
- As per Feedspot, the Reddit blog on COPD is one of the most popular blogs, followed by Facebook fans (more than 1 million users) and Twitter followers (more than 500K users).
- Based on Reddit posts, COPD patients seek opinions, clarifications, and share experiences with other COPD patients on COPD treatment plans that include medication, diagnosis, insurance plans covering COPD, and inhalers and nebulizers.
- Reddit users also share their fears on being diagnosed with COPD, seek clarification on COPD symptoms, share treatment progress and other inspiring patient stories about COPD.
- Patients have access to Facebook pages and Twitter groups related to COPD (such as the COPD Foundation, COPD Friends for Friends, COPD.net, and Breathe Better) where they get the latest medical information on COPD treatment plans, drugs, and diagnostic symptoms.
- Twitter users are very interested in pharmacologic and non-pharamacologic treatments for COPD. The areas that were tweeted the most were on the symptom effects, non-drug treatment, children-related, drug treatment, prevention, COPD triggers, environment, and functional impact.
We started the initial search on the social media channel used by COPD patients. We found some survey reports by the COPD Foundation that mentioned the overall social media usage but did not disclose information specific to channels. Next, we continued our research on the direct social media channels (e.g., YouTube, Facebook and Twitter). We found that most of the COPD healthcare providers used patient videos in their services as educational tools for patient engagement. We also found that is applicable for patient usage since when patients register, they use these YouTube videos for information on COPD. Additionally, we gained insights on Facebook and Twitter users from online discussion forums.