I recently wrote about how social media might help scientists do their work, so a paper in IJWBS on how those on the receiving end of medical science – patients and healthcare practitioners – might benefit from web 2.0 caught my eye.
IT consultant Maire Heikkinen of University of Tampere, Finland, has focused on how the internet might be used in rehabilitation courses for sufferers of long-term neurological diseases including Multiple Sclerosis (MS).
Today, more than 2,500,000 people have MS, a disorder that affects different areas of the central nervous system and so leads to a wide range of symptoms from blurred vision and numbness to weak limbs, unsteadiness, and fatigue. Periods of relapse and remission are often characteristics of the disease but for other people the disease progressively worsens. Either way, it can limit everyday life seriously and makes for an uncertain future for sufferers and those close to them. “There is no known medical cure,” Heikkinen told Sciencebase, but medicine can help moderate the symptoms and prevent relapses, and rehabilitation can help people considerably.”
Getting hold of useful information about one’s disease, discussing problems, and following rehabilitation schemes, is Heikkinen explains an essential part of the process of healing.The rehabilitation for MS patients has traditionally been face-to-face courses and personal physiotherapy, but the internet has enabled some forms of online rehabilitation.
She has looked at the concept of a virtual community for rehabilitation and, in particular, the opportunities for sociability among participants. She found that peer support and the swapping of experiences were the most important part of the online activities. But, perhaps most intriguingly, the MS patients in her study seemed to have a higher trust level among themselves than is common in some online activities. The participants apparently preferred to get to know each other rather than operating anonymously as is common on other internet rehabilitation and support courses, those for cancer sufferers, she cites.
The internet course Heikkinen studied was “Power and Support from the Net”, which was organised by the Finnish MS Society. While there are those who claim that such virtual communities are somehow worth less than face-to-face contacts, others point out that circumstances and ill-health often prevent people from making direct social contact. It is the virtual nature of “online” that seems to offer a significant advantage in a virtual rehabilitation community, in that people are often more willing to discuss problems online than they would be in a face-to-face meeting.
There is evidence that being online is not the depressing default state that those railing against it would have us believe. Heikkinen’s study certainly suggests this is true with regard to outcomes for MS sufferers involved with PSN.
The internet was shown to be a suitable tool for arranging rehabilitation courses for MS sufferers, she says. The course team could build a virtual community at least for the duration of the course, but it will also be possible to continue the team after the course. The course may thus serve as an initiator for a longer-lasting virtual team that will exist for as long as the participants stay active.
Various researchers have outlined the benefits of online community in the past. Virtual communities are inherently social networks because at the base level they link together people, organisations and knowledge. They can become integrated into our daily lives and, as anyone with an active web 2.0 account knows, the internet can increase our contact with friends, relatives, and other contacts regardless of geography, time, or state of health. Fundamentally, adds Heikkinen, “When computer systems connect people and organisations, they form social networks.”
Maire Heikkinen (2009). Power and support from the net: usability and sociability on an internet-based rehabilitation course for people with multiple sclerosis Int. J. Web Based Communities, 5 (1), 83-104