The role of online networks for head & neck cancer patients

Connected across space and time: the role of online networks for head and neck cancer patients

Being connected across space and time. That is what an online cancer community can offer head and neck cancer patients from all corners of New Zealand.

A group of patients in Auckland have set up a website that patients and their loved ones can access at any time and from anywhere.

Maureen Jansen, spokesperson for the newly incorporated Head and Neck Cancer Survivors’ Network, says that for her and many other members of the network, the internet has had huge advantages. They have used head and neck cancer support sites in the US, such as the Oral Cancer Foundation (OCF), and have found them to be “lifesavers”.

Now it is time to have a New Zealand organisation for head and neck patients.

What is so good about online support networks? “First, they are a place where you find understanding and information,” says Maureen, who was steered through radiotherapy by the team at OFC. “I followed their advice so closely that I managed the treatment well.”

But it’s the emotional support that is powerful at these sites. “When you wake up at 3 am scared out of your mind, there is somewhere to go where you can vent.”

Maureen says it is essential that such sites are well moderated and contain evidence-based information. That is what the HNCSSN is going to provide with their new website to be launched later this week. They collaborate with the Cancer Society, ORL at Auckland City Hospital and other health professionals to make sure they stay on track.

Members of the network are increasing daily through a recently opened Facebook group. This will remain in place but the website will offer many more options. There will be resources, a forum, printables and much more. A Facebook group is a superb forum in itself but does not have the storage capacity and multi-faceted features of a website.

The internet can have several advantages for health care. There can be direct lines of communication between professionals and patients. Patients who engage online are more likely to take an active part in their care. They’re more informed. They learn coping strategies. There’s always someone who has their back.

It is very exciting to be able to provide the first online community for head and neck cancer patients in New Zealand.

Contact details

Email: headandnecknetwork@gmail.com

Temporary website: www.headandnecknetwork.blogspot.co.nz

Facebook group: look for Head & Neck Cancer Support.

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