5 Great Online Communities for Patients With Medical Conditions

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Health care is constantly evolving and adapting to current trends. New forms of digital communication have had a major influence on the way we understand many conditions. Freely available web-based platforms started a type of a social revolution that is changing the way patients interact and engage with each other. According to an article by Dr. Katherine Chretien and Dr. Terry Kind, social media is becoming a valid medical tool.

Online Communities for Patients With Medical Conditions

Peer-to-peer health care is attracting an increasing number of Internet users who look for information and support. Many people report that they receive more emotional support from fellow patients, friends and family members compared to health professionals. A national telephone survey by Pew Research Center showed that 18 percent of internet users look online for people with similar medical challenges. Patients with chronic diseases are particularly interested in connecting with others via the internet. Twenty-three percent of them reported an interest in online communities of people with the same condition as theirs.

Researchers are starting to explore the phenomenon of online patient engagement. They are finding multiple benefits of such networking activity. A recent study led by Prof. Eivor Oborn of Warwick Business School found that patients can be more effectively supported and managed outside the mainstream health system.

Connections they forge in different online communities can be instrumental in their disease management. 

Patients can now join a plethora of social networks aimed at specific conditions or diseases, offering information on research and new medical trends, as well as advice and personal stories from fellow members.

CureDiva

CureDiva was founded by a group of women who were diagnosed with breast cancer. The site is a combination of an online community and a stylish shopping network. Designed to meet the various needs of breast cancer patients—from those just diagnosed to those who are long-term survivors—this platform provides peer support and practical solutions. The site focuses on both medical and non-medical questions, and emphasizes the femininity factor that many women might be anxious about losing during treatment. CureDiva’s product repertoire ranges from essentials such as hospital robes and bras to body lotions and books. The site also offers a wide variety of information on different phases and types of treatment, and its blog is filled with personalized stories and insightful discussions.

Connected Living

Connected Living specializes in networking for seniors. Its innovative program provides the elderly with mobile technology and teaches them how to use it. This enables them to connect with friends and family members and also promotes inter-generational dialogue. Connected Living software is used by many residential homes to help sites engage with their clients and provide them with visual cues and stimulation that can support their well-being.

Connected Living’s discussion groups incorporate themes such as music, videos, and trivia that can spark conversations and build better relationships between people of all ages.

Koko 

Koko started as the social network project Panoply. Panoply was designed to combat depression and developed as a part of an MIT Ph.D. project by Robert Morris, who also holds an undergraduate degree in psychology. Morris aspired to make mental health services available to everyone and created Panoply—an experimental social platform for people who feel depressed. The project aimed to computerize cognitive behavioral therapy in a supportive and empathetic way.

The users were encouraged to help each other reinterpret reality in a more positive way and modify their thoughts. The ideas behind Panoply have then been used by Morris to develop an iPhone app called Koko. This app uses collective intelligence to promote well-being. The app has already undergone randomized controlled trials, and purports to outperform other software programs designed for depression. In August 2016, Koko launched a new chatbox experience called KokoBot. When users share their stressful experiences, the chatbox selects an appropriate peer for them so they can get immediate help. All content is moderated by the software to ensure users are exposed to principles of cognitive therapy. KokoBot can now be accessed on Kik. Telegram and Facebook Messenger. 

Phoenix Helix 

Phoenix Helix is produced by Eileen Laird. This website attracts patients who decided to manage their auto-immune conditions using a holistic approach that includes an auto-immune paleo (AIP) diet and lifestyle changes. Eileen, herself diagnosed with rheumatoid arthritis, is sharing her experiences and linking the community with other similar sites and blogs. She shares stories, AIP recipes, and answers questions as well as regularly produces podcasts that cover various topics regarding auto-immune diseases. The site’s main strength is Eileen’s down-to-earth, realistic approach and a wealth of evidence-based information gathered in one place.

HealthUnlocked

HealthUnlocked does not cover one single condition. It offers people around the world an opportunity to compare and contrast their diagnoses and treatments. It links people with similar symptoms who can ask questions as well as discuss their test results and learn from each other. The website includes over 500 different communities users can join after creating a profile. These communities are often run in partnership with medical organizations and charities, for example, the Multiple Sclerosis Association of America and the COPD Friends. In March this year, the site launched its first iPhone app, which is free. However, it is currently only available in the United Kingdom.

A Word From Verywell

As with all open information repositories, these sites can have information that is counter to what would be considered prevailing medical wisdom. Site visitors and contributors need to understand that they are likely to get access to a lot of qualified information, but also a lot of unqualified information. Nonetheless, these types of social platforms—ones that allow people going through similar circumstances to connect—have their place and have proven to be valuable for the communities they serve.

Sources

Chretien K, Kind T. Social media and clinical care: ethical, professional, and social implications. Circulation, 2013;127(13):1413-1421.

Fox S. Peer-to-peer healthcare.Pew Internet & American Life Project. http://www.pewinternet.org/2011/02/28/peer-to-peer-health-care-2  Published February 28, 2011.

Oborn E, Barrett SK. Digital health and citizen engagement: changing the face of health service delivery. Health Services Management Research, 2016; 29 (1-2):16-20.

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