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VirtualHospice.ca : Online Palliative Care Community & Resources
This week, my blog series will be focusing on several Canadian healthcare social networks. This is part 4 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
- CaringVoices: Princess Margaret Hospital Offers Online Support for Cancer Patients
The featured Canadian healthcare social network for today is the Canadian Virtual Hospice. I learned about this organization and its online community via a colleague on LinkedIn, Gail Granger, who responded to my call-out for suggestions of Canadian healthcare social online communities. I checked the site and its online community features and found the therapeutic concept to be so different than many other online patient communities that I had been investigating, that I absolutely wanted to learn more. Shelly Cory, the Executive Director, chatted with me about the specific challenges regarding a site focusing on the sensitive topic of palliative care. For highlights of the discussion, see below.
What is Canadian Virtual Hospice?
Canadian Virtual Hospice provides online resources to patients, caregivers and healthcare professionals regarding life-limiting illness, palliative and end of life care, loss and grief. Palliative care is an approach to care that looks at the whole person and their whole family; physical, cultural, emotional, spiritual, and financial needs at end of life. Palliative care is appropriate from the time somebody is diagnosed with a life-threatening illness. Although palliative care is often associated with cancer illness, the palliative approach is appropriate for those suffering from chronic illnesses including COPD, Alzheimers, and diabetes. The same holds true for the VirtualHospice.ca site. The site can assist people from the time of diagnosis and provide support through the grieving process regardless of the type of illness they have. The goal is to help people gain information, comfort and support throughout the entire continuum of care.
When was it launched?
The VirtualHospice.ca site was developed by palliative care researchers and clinicians across Canada as a way of addressing gaps in resources and info about palliative care. The site and the discussion forum were launched in February 2004. Re-launched in January 2009 with new features and content, Virtual Hospice also focused on additional interactivity and set up a FaceBook fan page, a Twitter profile and a YouTube channel to facilitate engagement with patients, caregivers and healthcare professionals. The discussion forum is currently being revamped and when completed will be more prominent on the website.
Is it just for Canadian patients and caregivers on the network?
The site`s discussion forum and vast repository of information is open to people from all over the world, but the “Ask a professional” service is for Canadians only. This section is not social media, but it provides an interesting service that allows people, including healthcare professionals, to ask a question to a multidisciplinary palliative care team about their specific situation. The team then collaborates on the answers and provides a confidential detailed response within 3 business days, and often within just 24 hours. Half of the visitors to the site are health care providers looking for advice, patient teaching tools and other tools to support their practice.
The Canadian Virtual Hospice FaceBook fan page, Twitter profile and YouTube channel are open to the public from all countries.
How many members are there on the VirtualHospice.ca site, and how active are they?
An average of 1,000 people per day visit the VirtualHospice.ca site; half of which are patients, family and friends, and the other half, healthcare providers. Since its relaunch, the site has fielded visitors from Canada as well as 154 other countries, with the United States, Australia and France driving 20% of the website traffic.
The user group is constantly changing because most visitors obtain benefit from the site and the discussion forums for a finite period of time. A person may use the site while a family member is ill and going through the grieving process, and then will move on with his or her life. Some people come onto the discussion boards and post multiple times, but generally when people are in an end-of-life situation, they do not have a lot of time or energy to visit or participate in the forums on an ongoing basis.
This is demonstrated in the discussion forums, where there are very few recent posts, however there are a lot of page views suggesting that people are visiting the forums and reading the discussions. Having reviewed several online patient communities, this seems to be the norm, but it appears as though the ratio may be a bit more pronounced compared to other patient forums.
Healthcare providers are the ones who use the site for the long-term, therefore there is a lot of reliance on healthcare providers to promote the site to their patients.
What role do the sponsors play?
There are several sponsors for the Canadian Virtual Hospice website, which also includes the social media channels. These sponsors consist of the Canadian Partnership Against Cancer, the Winnipeg Regional Health Authority (WRHA), CancerCare Manitoba, the Government of Manitoba, and Health Canada. The sponsors provide funding and sometimes assist with resources as well. For example, the Canadian Virtual Hospice sources staff, such as nurses, from WRHA to assist in answering the ‘Ask A Professional’ questions. However, the sponsors do not provide any strategic input in the management of the organization or the site.
How are the site and online discussion forums promoted?
Palliative care is a sensitive topic, which is usually of interest to individuals only during their time of need. Therefore promotion of the site directly to consumers needs to be frequent and wide-spread, which can be challenging with a limited budget. Promoting to healthcare professionals and relying on them to inform the appropriate patients may have greater potential than trying to promote to the masses.
However, certain tactics have proven effective. These include niche palliative publication advertisement, niche palliative care conferences, Google ads and radio ads. Interestingly, search engine optimization has not been as effective for Virtual Hospice as SEO typically is for a website. This may be due to differing Internet user habits among the target audience, which has a higher average age than web users in general. Media exposure is critical for the Canadian Virtual Hospice. When the Global National ran a story about the site in March 2009, traffic spiked substantially and the ‘Ask a Professional’ section received an instant influx of inquiries.
Linking with other healthcare organizations has also proven to be effective in increasing awareness and driving traffic to the site. Currently, there are over 5,000 links that lead to the virtualhospice.ca site.
One such example of linking with other medical organizations consists of an online support group facilitated by psychosocial oncology counsellors, which are led by the BC Cancer Agency. The Canadian Virtual Hospice promotes these groups on their site. The BC Cancer Agency provides ’real-time’ online support for cancer patients, cancer survivors or friends and family across Canada. These are counsellor-led online group sessions which take place over a 8-10-week period, with each session lasting 1 ½ hours. The online discussions are closed and private, meaning that groups have the same 6-8 members attending each week, allowing members to really get to know each other over the duration of the group. The discussions are anonymous in that members chat via text only, and know each other only by first names and by the information that the members choose to share. Overall feedback has been very positive. Patients and caregivers have described feeling a sense of connectedness, safety and relief in being able to discuss important but difficult topics with a counsellor and an understanding group of peers. Patients are learning about this program mostly due to word-of-mouth from healthcare professionals. The partnership between the Canadian Virtual Hospice and the BC Cancer Agency is a win-win situation, as when patients leave the counsellor-led sessions, they are reminded of the virtualhospice.ca resources. As of January 2010, 24 groups and 179 people have had the opportunity to engage with others and a counsellor, either locally or nationally, from the online program.
To learn more about this service provided by BC Cancer Agency, take a look at the Cancer Chat Canada website.
Is there any monitoring or editing of the content posted by the members?
All discussions are monitored because these are exposed to a very vulnerable population.
Are there any advertising or sponsorship opportunities on the Virtual Hospice network?
There is no advertising on the site or the forums. There are opportunities for non-branded sponsorship or partnership projects. The Canadian Virtual Hospice respects the emotional drain and vulnerability of their site visitors and members, therefore any potential for influence is carefully considered.
The Canadian Virtual Hospice clinical team has put together over 170 clinical tools developed by various palliative medical teams. These tools are especially useful for healthcare professionals who deal with palliative care. If a medical or pharmaceutical organization promotes palliative care drugs, they may find excellent resources on the site, and they may even wish to contribute some of their own palliative care non-branded materials.
Challenge for a Canadian agency to show their stuff: The Canadian Virtual Hospice is looking for a creative agency interested in helping to promote the site at either no or low cost. Palliative care is not an easy sell to people – does your agency have what it takes, and if so, care to show off your skills? Interested? Contact Shelly (contact info at bottom of article).
Interested in discussing sponsorship or partnership opportunities with VirtualHospice.ca, then please contact Shelly Cory at email@example.com or (204) 477-6285.
DISCLOSURE: I have not been paid to write this article, and the organizations mentioned are not clients.
Tomorrow, we will take a look at a beta site, which will allow mental healthcare professionals to collaborate online.
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