In addition to getting information and support from the doctor or other health professionals, more people are now turning for help to online resources, and in particular Online Patient Communities (OPCs). This may especially true if they are living with a chronic health problem like diabetes, cancer, heart disease and skin problems.
In January 2011 CBC News published the findings of a November 2010 study regarding online medical information and reported, “When it comes to accessing health information, 41 per cent of the Canadian adults polled said they turn to online sites centred around a specific disease, medical issue or health-related product. Nine per cent visit online patient communities such as chat rooms and support groups.”
The Patients Association of Canada (PAC) advocates for this Internet use. Sholom Glouberman, then PAC president, told CBC, “Patients are much more empowered now when they come into the health-care system because of the internet.”
This is, after all, the World Wide Web, so joining an OPC may give patients the chance to interact with people from around the world and learn about treatments being used in other countries that may not yet be available in their local community. There are other benefits as well, outlined in an article by Dr. David Lee Scher, a former cardiologist and consultant with DLS Healthcare Consulting, LLC.
They can provide education, emotional support, information and tools for caregivers, other resources which are available and perhaps most importantly, says Scher, “a forum for patients, caregivers, and providers to interact.” He points out some other advantages including the fact that a patient may not be able to physically get to a support group because of location, lack of transportation, mobility issues or because they are not well enough to go to a meeting. There is also likely to be more physicians or caregiver interaction with the patients in an OPC versus a support group, Scher notes, and OPCs often represent the same demographic as patients in support groups.
There are some drawbacks to the OPCs as far as physicians are concerned, he points out.
“The top physician concern with patient communities is the potential for misinformation to be shared. Also, some physicians view these sites as forums for complaining about the medical community rather than fostering dialog about how best to use it.” Scher points out, however, that there can be improved access to care that is supported by this [online] communication. The communication rarely includes physician-patient contact however. There are issues of patient privacy, physician liability issues and this cannot replace the patient / physician relationship.
However, the benefits seem to outweigh the advantages so much so that associations set up to support patients dealing with a particular issue are forming OPCs. One example of this is the Canadian Association of Psoriasis Patients. (CAPP)
This was an initiative of the Canadian Skin Patient Alliance, which describes itself as, “by patients for patients, a resource and community for Canadians living with skin conditions, disorders and traumas. It provides balanced, vetted information, support and advocacy for skin patients and their families.” The CAPP deals with the often-misunderstood skin condition of psoriasis, offering patients stories (in video format), treatment options and other resources. “Our goal is to get this challenging and misunderstood skin condition out into the open, and to help us all as we manage our lives with psoriasis. We also want to make sure that anyone, anywhere in Canada, can get access to the treatment they need.” (CAPP website.)
While this is just one example, other OPCs may be found through most major groups including provincial and/or national associations. They are also sometimes set up by pharmaceutical companies, as is the case with the MS Village to help people living with Multiple Sclerosis. “MS Village (MSV) is a Canadian, bilingual education program and online community that EMD Serono (EMD), maker of Rebif®, established in 2009 to provide comprehensive information about Multiple Sclerosis (MS) and to empower patients to make informed choices about managing their health.” The manufacturer noted in 2012 that traffic to the site and interaction between visitors had declined, so the site was recently re-launched to “eliminate barriers to visibility and user loyalty and to find new ways to encourage dialogue and deliver true value to Canadians living with MS.”
However a OPC is put together, managed and run, there is no doubt that more people are looking online for information regarding their health—and that much needed support can be just a click away.
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