One of the benefits of the Internet is its use as a tool to create communities among people who previously would have been isolated from each other. Nowhere is this more apparent than in the growth of online forums for people with chronic illnesses and disabilities. These are playing an increasingly important role in providing information, support and assistance to people with serious and chronic illnesses but they remain an under-researched area of the health system. Susan Stewart Loane, a PhD Researcher at Macquarie University, is addressing this gap through her research and provides the following report of her findings. She writes:
No one had heard from Tracey[*] for a while, which was a concern because Tracey had Motor Neuron Disease (MND). Members of Tracey’s social circle tried valiantly to contact her with no success. Finally, someone decided to drive 250km to her house and check that she was ok. She was. She’d had a fall and was too dizzy to use the computer. The friend got the message out and everyone was relieved. But a week later Tracey still hadn’t got in touch and they started to worry again. Someone who lived closer (but who barely knew Tracey) offered to drive to her house and check on her. Again Tracey was found to be ok, but still recovering.
What is extraordinary about this story is that all of those involved, the two people who visited Tracey and the more than 100 people who were concerned, are strangers to each other. Their only connection to each other, and to Tracey, is that they all have MND or know someone who has, and they are all members of an online forum for people living with MND.
Online health forums are typically known as places where information about treatment and symptoms is shared between people who are ill, and where strangers deliver online support to one another. As a researcher in this field I make a point of asking my own medical service providers, as well as medically-trained friends, for their view of online health communities. Few have ever used one, but around half of those I’ve asked express concerns about unsafe information being shared or about the general weirdness of strangers comparing medical details across geographic borders. The most positive reactions come from more experienced medical specialists who are excited about the potential for people to provide forms of support to each other than can’t sustainably be provided within the health system.
My research** has convinced me that genuine bonds can develop between people who use online forums for health purposes. Social support delivered through posts and threads can build community, as evidenced by Tracey’s story. Communities look after their members in ways that bureaucrats and formal service providers cannot. Unless a doctor or other health professional has experienced the same health condition, they simply can’t communicate with their patients in the same way that a fellow-sufferer can.
I have observed people counselling one another about how to cope with work-related stigma, how to deal with friends and family who don’t understand and how to manage health professionals who treat the illness or disease but fail to understand the wider impacts on the person’s life. I’ve seen posts by people comparing photographs of post-surgical scars for reassurance, and collectively assisting a participant to write a job application without revealing her health status. Time and time again participants in online health forums report positive outcomes from following the advice of others about how to manage daily living.
They also report positive feelings associated with helping others. It is not hard to imagine that someone with a debilitating health condition might enjoy the opportunity to contribute to the lives of unseen others, even if they feel like a burden on their own family members.
Online health communities also contribute to increased confidence in managing a self-care regime. The health system is not set up to respond to those who have questions late at night or on weekends, or who just need someone to talk to about their concerns and experiences. Others can provide support and suggestions at any hour of the day or night.
Trust is a major issue for all participants in online health forums, and some doctors express concern about the veracity of information shared. My research indicates that active online forums, frequented by people with lived-experience, tend to be self-correcting. When a dubious suggestion is made others quickly correct or supplement the information shared, ensuring that participants receive appropriate advice.
Forums moderated by well-known, credible organisations may initially be more appealing to some participants than forums moderated by peers. Care must be taken by the organisation managing the forum to allow participants to take the leading role in responding to questions and offering advice, only stepping in to correct errors or bridge gaps, such as when someone asks for help and no one else responds. Overly active moderators appear to interfere with the development of social bonds and trust between participants although more research is needed in this area to identify the point at which moderation ceases to be a safety net and becomes intrusive.
This week the Minister for Health, Peter Dutton, will formally launch a new online peer-to-peer service for Australians with mental illness and those who care for them, www.saneforums.org. Participants will be able to converse with each other through an online forum moderated by staff from SANE Australia, sharing their experience of mental illness and supporting one another directly.
SANE Australia received government funding to establish these forums, indicating that the Australian Government sees a place for online health forums within the pool of resources available to patients. Ultimately the forum’s success will depend on people who are prepared to share their stories and help others. My research indicates that those who do so may experience benefits such as increased confidence and well-being in addition to the satisfaction that comes from helping others.
* This is a true story but the names have been changed
** Stewart Loane, S., Webster, C. M., & D’Alessandro, S. (2014). Identifying Consumer Value Co-created through Social Support within Online Health Communities. Journal of Macromarketing, Online First.
Stewart Loane, S., & D’Alessandro, S. (2013). Peer-to-Peer Value through Social Capital in an online Motor Neuron Disease Community. Journal of Nonprofit and Public Sector Marketing, 25(2), 164-185.