This week, my blog series will be focusing on several Canadian healthcare online social networks. This is part 3 of 5. The previous posts of the series can be found here;
- Upopolis: Social Media for Kids in Hospitals
- TeenConnector.ca: Where Canadian Teens with Cancer Connect
The featured Canadian healthcare social network for today is CaringVoices . The Centre for Innovation in Complex Care (CICC) sent me a tweet about the network via their CICC Twitter account, informing me that they use this network and are very satisfied with it. So many thanks to the CICC for sharing this information. Isn’t Twitter just the best for communicating with others with similar interests! In fact, you can follow CaringVoices on Twitter, but at the moment, the account is not very active.
Sara Urowitz, Manager, Education Informatics, Princess Margaret Hospital/University Health Network, is responsible for the management of the CaringVoices.ca network. We had the opportunity to discuss the network and below are a few highlights of our discussion;
CaringVoices is a national Canadian online community specifically designed for cancer survivors, where they can chat and discuss issues and personal experiences with one another, find current resources about their disease, and take part in online events. Members of all ages are welcome, as are caregivers, healthcare professionals, and those with a special interest in the topic (called ‘visitors’ on the network). The objective of the CaringVoices is to address the psycho-educational, psychosocial and supportive care needs of Canadian cancer survivors.
The network is an initiative of the Princess Margaret Hospital (PMH). Funding was received from the Princess Margaret Breast Cancer Survivorship Program, The Quilt (Stratford, Ontario), and the Princess Margaret Hospital Foundation. The site is supported, hosted and maintained by Klick Communications.
In speaking with Andrew Chak, Senior Vice President – Experience Design and Innovation of Klick Communications, he alluded to the fact that CaringVoices also allows the PMH to extend their patient support program to their patients even after they get discharged.
When was it launched?
CaringVoices was launched in 2006 as an online community for social networking for Breast Cancer with the intent that it would eventually be expanded to support all cancers. In 2008 the General Cancer community was launched, and in 2009 both the Gynaecologic and Hematologic Cancer communities became available.
A Gastrointestinal Cancer community is currently under development with the hopes for a launch in early Spring 2010.
How did CaringVoices gather so many resources for its members?
Much of the success of the network has come from collaborations with community cancer organizations. For example, Ovarian Cancer Canada has partnered with the Princess Margaret Hospital to promote, manage and enhance the Gynaecologic Cancer community, Wellspring has offered events for the CaringVoices community, and Willow recommends the site as a source for breast cancer information. The Canadian Cancer Society – Cancer Information services hosts a monthly event on finding information and resources in your community. There are other collaborations as well.
Also, their event calendar is loaded with events, so there are frequent opportunities for CaringVoices members to learn more about their disease, and even ask questions to the moderator of the event. Here is a sample of their February 2010 event calendar. As a member of the online community, you receive an e-mail notification of upcoming events.
The network does not ask if the new member signing up is from Canada. Is the intent for CaringVoices to be a global or mostly Canadian online network?
The CaringVoices online network welcomes the involvement from non-Canadians, however the mandate is to look for Canadian content, collaboration and sources of expertise, and to attract Canadian cancer survivors.
How many members are currently using the network?
Survivors, caregivers/healthcare professionals and visitors can become members of the site. Registration is quick and simple, with little data required to become a member. In fact, it took me less than 30 seconds to sign up as a ‘visitor’ member.
As of December 2009, there were approximately 2,500 users, nearly 10 million total page views (9,850,000), and over 400 moderated online chat events.
Who can add resources? If external parties can add resources, is there an approval process to ensure that information is accurate and reliable?
The resource section is maintained by the Patient Education and Survivorship (PE&S) program at the Princess Margaret Hospital. The PE&S Information Specialist is responsible for overseeing the resource section. This person reviews and updates the resource section based on needs (for example if a new community is launched, or if something has been triggered by an end-user’s request or posting in one of the forums). Collaborators who have existing resources often share their information with the network.
The Princess Margaret Hospital reviews the resources to ensure that they are reputable, accurate and up-to-date. The information that is added by external parties is monitored, and responded to when necessary, but it is very rarely censored. Only information that is inaccurate, frightening, or spam-like are censored.
What role do the sponsors play?
The sponsors do not have any control or responsibility with regards to the management of the CaringVoices online community.
How is the CaringVoices online community promoted?
Princess Margaret Hospital promotes the community at professional conferences such as Patient Education Conferences, Nursing Conferences, and various cancer survivorship conferences, where they distribute promotional materials including information brochures about the community;
The brochure was created by the Princess Margaret Hospital.
Additional promotion of the online community has been through the collaborators. Despite the limited promotional efforts, the community has grown steadily. It is assumed that survivors who are members of the community are spreading news about it via word-of-mouth.
Which hospitals promote the use of the online community to their patients?
Formal and informal collaborations have been formed with other cancer programs and hospitals. Information about CaringVoices is available through the Hope and Cope program at the Jewish General in Montreal, through the Patient Education program at the Oddette Cancer Centre, Sunnybrook Hospital, through Patient Education at St. Michael’s hospital and others.
Who organizes and holds the online community events?
Currently, 15 to 30 live 1-hour online chats (via text only) take place on a monthly basis. Most of these events are organized by the Princess Margaret Hospital. The events are moderated by a professional from the Princess Margaret Hospital, trained volunteers, or reps from community cancer agencies, including reps from collaborators. There are 3 categories for the online chat events: 1) Clinical Corner, which is moderated by healthcare professionals (e.g. Chemo Questions, Managing Fatigue etc), 2) Knowledge Café, which focus on living with cancer and are often moderated by community partners (e.g. Talking with your kids about cancer, Managing your Finances, Where to Find Information and Support in your community etc), and 3) Talking Sticks, which are peer-led chats in which members are encouraged to share their experiences with one another.
Are there any advertising or sponsorship opportunities on the CaringVoices community?
To date, there have been no advertising or sponsorship opportunities for pharma / medical companies. There has been pharma funding for the Patient Education and Survivorship Program, but not for the online community itself. In fact, in previous discussions with various pharma companies, they preferred not to sponsor the community due to concerns about reporting of adverse events on the site and the subsequent responsibility of the drug company.
However, for medical / pharma companies who would be interested in supporting CaringVoices, the Patient Education and Survivorship Program at Princess Margaret Hospital accepts unrestricted learning grants in support of online (educational) chat events as long as the company remained at arm’s length.
Interested in collaborating with CaringVoices, or sharing your Canadian expertise or content, or discussing the opportunity of sponsoring an online event, then please contact Sara Urowitz (firstname.lastname@example.org or email@example.com ), 416-581-8616.
DISCLOSURE: I have not been paid to write this article, and the organizations mentioned are not clients.
Tomorrow, we will take a look at an online community for Canadian patients, families and healthcare professionals involved in palliative care.
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