Such communities are either on Facebook groups or some online platforms built specifically to facilitate patient interaction.
While most people use social media to share their achievements and happy moments, the platform is also serving as a source of comfort for a number of patients and caregivers who were earlier suffering alone but are now supported by online patient communities.
On the second day of the Middle East Healthcare Social Media Summit in Dubai, a panel of healthcare professionals discussed how social media impacts patients and empowers them if used in the right way.
Talking about his personal journey that led him to take up research and development of online patient communities professionally, Dan Hinmon, community director of the Mayo Clinic Social Media Network, said: “I was just 25 when my newborn was diagnosed with a rare liver disorder and we were faced with a tough choice whether to get her surgery done or not as their was no guarantee that she would survive both ways. Me and my wife felt absolutely alone, terrified, making the most important decision of our lives that time. I would have given anything for a helpful online support group but that time there were none. My daughter died and I realised how online support groups add to the development of new social relationships that alleviate the sense of isolation and lonliness.”
Defining online patient communities, he said such communities are either on Facebook groups or some online platforms built specifically to facilitate patient interaction.
Hinmon said that the glue that binds online patient communities together is disclosure or sharing personal experiences. “Findings suggest that online social support groups can be valuable resource for informal caregivers who are in need of emotional support and lack the ability to access face to face support groups. Patients come online to learn and support each other. They do not come to get more advise as they can get that on the Internet or through their physicians,” he said.
Hinmon urged healthcare professionals to be patient advocates and create online patient communities that he called ‘safe places’ for patients to get the support, love, nurturing, compassion and understanding that they need.
Dr Ali Al Dameh, American Hospital of Dubai, said that apart from emotional support, social media helps in providing health information on a range of conditions, offers answers to patients and comforts them by allaying their fears, it helps collecting data on patient experiences and opinions and also facilitates dialogues between patients or patients and doctors.
He added: “Highest impact of social media was seen on patients with rare diseases who try to find answers related to their disease online. Patients can share stories, learn from others, spread knowledge and instill hope through social media platform. Studies also found that there was improved self-management and control in patients who engaged on social media.”
Another panelist Fatimah S. Alhamlan, a scientist at King Faisal Specialist Hospital & Research Center, Alfaisal University in Riyadh, said social media is a very strong tool and can empower patients if used in the right way. Fatimah, founder of an NGO that focuses on women health, said she uses social media extensively to educate and empower women on health issues. “I believe knowledge is power and it is our responsibility to immunise our community with accurate, trusted information which can help them feel empowered, behave responsibly and make sound decisions.”
The two-day summit was held at the Mohammed Bin Rashid University of Medicine and Health Sciences in collaboration with Mayo Clinic and American Hospital Dubai.
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