CAMH – Mental Health Conversations on Wikis, Podcasts, and Mainstream Social Media

This week, my blog series will be focusing on several Canadian online healthcare social networks.  This is part 5 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
• VirtualHospice.ca:  Online Palliative Care Community & Resources

The featured Canadian healthcare social network for today is the CAMH Knowledge Exchange site.  I saved this one for last because it is unique compared to all the others that we have visited over the past week, in that the target audience for the online community consists of healthcare professionals mostly, with one special feature for caregivers and families.

It was serendipity that brought me to this site, because I was searching through the CAMH (Centre for Addiction and Mental Health) site to see if they were hosting any kind of online social networks for their patients / clients.  This seemed like a reasonable spot to search considering that the Forrester Inc. Research, April 22 2009 report suggests that people afflicted with mental illnesses tend to be active participants and may benefit the most from online social networking.

As I scoured through the CAMH site, I came across a page called ‘Knowledge Exchange’, which included a wiki.  The wiki had very little content, but it looked interesting nonetheless.  It is at that point that I connected with Krystyna Ross, the Publisher and Manager of Publication Services at CAMH, and discovered that the wiki had not even been officially launched yet.  It is scheduled to be launched in a few weeks, and only a handful of people have had the opportunity to use the site for beta testing purposes.  You get a sneak peek of the beta version before it goes live!

What is CAMH Knowledge Exchange?

CAMH Knowledge Exchange is different than the overarching CAMH.net site in that it is specifically designed for healthcare professionals (HCP) (Psychiatrists, social workers, policy makers, nurses, pharmacists, allied professionals).  The objective is to collect reliable information for this target audience and to provide them with practical tools and resources.  The tools and resources will not be exclusive to CAMH info, but will also include linking to other sites and articles with info that are deemed to be valuable for the HCPs.

In order to be a single source of reliable info, the site also features collaborative tools, such as the wiki, as well as blogging and discussion board capabilities.  Other features are planned for future implementation.  Users will have the option to set up secured and partially-secured shared work spaces.  A couple of wiki projects have already started during the beta period; an international group of HCPs is working together on a paper and another group is revising guidelines related to mental health.

Another key audience for the Knowledge Exchange site consists of the primary care physicians.  According to CAMH, family physicians and general practitioners are the ones who see the most patients with mental health and addiction problems.  Therefore, CAMH will be including some very succinct information that will have practical clinical use (ie. quick screening tools, tips on when to refer or when to manage patients in own practice).  St-Joseph’s Hospital is working with CAMH on an Addiction Toolkit for primary care providers, and there will be additional toolkits to come.

GPs may be able to participate in some wikis as well.  This will depend on the wiki and its purpose. Participation in the wikis is determined by the people running the individual wikis and their objectives.

How will the CAMH Knowledge Exchange be promoted?

CAMH will start promoting the Knowledge Exchange site as soon as the official launch takes place.  As part of their promotion, here is a copy of the postcard (top image is the front and bottom image is the back of the postcard) that CAMH developed in-house, which will be distributed to HCPs in the mental health and addiction field.

Are there any CAMH social networks that are specifically geared towards the patients / clients and their families?

Currently, there is a FaceBook fan page and two official Twitter accounts for CAMH ( for media updates, and representing the CAMH Foundation), plus a new website set up by family council that represents patients, but no customized discussion boards or online community … well at least not yet!

Also, on January 18 2010, CAMH announced a podcast series called Teens and Tweens, features interviews with experts in adolescent mental health and addictions, and is targeted at educators, parents, social workers, and others who work with teens.  The podcast series will cover various mental health and addictions issues.  Listeners will be able to propose topics for future episodes as well as engage with other listeners on the Knowledge Exchange portal.

Are there any advertising or sponsorship opportunities on the Knowledge Exchange site or wiki?

At the moment, CAMH has not decided how they would like to proceed regarding external partnerships or sponsorships.  However, CAMH will have opportunities to host sites for other community agencies or HCPs who focus on mental health or addiction.  For such partnerships, only Canadian organizations / HCPs will be considered.

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Interested in discussing partnership or sponsorship opportunities with the CAMH Knowledge Exchange, then please contact Krystyna Ross at Krystyna_Ross@camh.net .

DISCLOSURE: I have not been paid to write this article, and the organizations mentioned are not clients.

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This concludes part I of my blog series on Canadian online healthcare social networks.  That’s right … there is a part II coming soon, but there is a bit more work left to be done.  Stay tuned!

Stay in touch,
Natalie

Connect with me on the following networks:
FaceBook, Twitter, LinkedIn

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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.

The online community features offered by VirtualHospice.ca site include a public discussion forum, a FaceBook fan page, a Twitter profile and a YouTube channel.

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 shelly@virtualhospice.ca or (204) 477-6285.

DISCLOSURE: I have not been paid to write this article, and the organizations mentioned are not clients.

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Tomorrow, we will take a look at a beta site, which will allow mental healthcare professionals to collaborate online.

Stay in touch,
Natalie

Connect with me on the following networks:
FaceBook, Twitter, LinkedIn

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TeenConnector – Where Canadian Teens with Cancer Connect

This week, my blog series will be focusing on several Canadian healthcare online social networks.  This is part 2 of 5.  The previous post of the series can be found here;

• Upopolis; Social Media for Kids in Hospitals

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The featured Canadian healthcare social network for today is TeenConnector.ca , an online community for Canadian teens with cancer operated by The Childhood Cancer Foundation.   On this network, teens can connect via discussion boards and blogs.

I discovered this online community via a report on the Canada.com site.  Just before the holidays, I contacted Mary Lye, the Director of Marketing and Communications at the Childhood Cancer Foundation – Candlelighters Canada.  She spoke from the heart, because before joining this non-profit organization, she went through the heart-wrenching ordeal of watching her teen go through cancer and cancer treatments.  Luckily, her child is doing well these days, but Mary holds the memory close to her heart and is passionately doing everything that she can to help teens afflicted with cancer connect with one another.  Below are some of the highlights of our discussion.

Why TeenConnector.ca?

According to The Childhood Cancer Foundation’s data, approximately 1,500 Canadian children are diagnosed with cancer every year.  Of these, approximately 300 of them are teenagers.  Since these teens have various types of cancer, it is very difficult for them to find one another.

Moreover, a recent Ipsos Reid study (June 2009) states that;

“Over three-quarters (76%) of online Canadians teens aged 12-17 now have a social network profile, up from 50% in 2007.”

As such, social media provides an excellent medium for helping Canadian teens find one another and provide each other with the support that they need.

Connecting with one another is important because many teens do not want to talk to anybody about their disease because they are embarrassed, angry, and ashamed.  Therefore, by providing them with a private world of other teens who are going through, or have been through cancer and have survived it provides them with an outlet to reach out to somebody like them, whom they can relate with and trust.

What features does TeenConnector.ca provide to its members?

Since TeenConnector.ca is a private online community, I was given access to a demo version of the site, but did not have visibility of the members’ journals or discussions.

The features provided on the network consist of the following;

• customizable profile, contact management (including friends, mentors and support team from The Childhood Cancer Foundation),
• sharing of experiences via group discussions and journals,
• event management (where members can accept or create events, and also add birthdays to their calendar),
• access information (on applying for a scholarship, view information videos or glossary),
• entertainment (play games, share videos, read news or design e-cards),
• and e-mail and notifications from other members on the network.

When was it launched?

TeenConnector.ca is brand new as it was just launched in December 2009.

Prior to launching, a lot of preparation took place in order to ensure that the community would benefit its members.  The first step was to build up mentors onto the site.  Mentors are cancer survivors who went through their cancer diagnosis and/or treatment while in their teen years, so they understand firsthand the issues and struggles that are involved.  This first step was critical so that when teens actually came on looking for help, they would find a mentor waiting for them.  There are currently 15 mentors from across Canada with a variety of types of cancer experiences.

The second step was to build an educators’ website so that teachers can learn more about how to communicate with their students who are living with cancer.

Is it just for Canadian teens with cancer?

TeenConnector.ca is an online community just for Canadian teens who have been diagnosed with cancer.  It is a private online community, therefore teens decide who can access their information.

Can members remain on the network once considered in remission?

Yes.  Despite being in remission, the suffering from a cancer diagnosis and/or treatment does not just go away.  According to The Childhood Cancer Foundation, 70% of children who have cancer will have lifelong effects of the treatments which changes the way they live (heart problems, brain damage, limb loss, ‘chemo brain’, emotional issues such as grief, anger, resentment and disbelief).  TeenConnector.ca aims to provide lifelong support to its members.  The intent is also for some of these teens who remain active on the network to eventually become mentors for others.

What role do the sponsors play?

TEVA Novopharm has sponsored The Childhood Cancer Foundation with a $300,000 grant over a two-year period.  The programs that this funding is supporting consist of the educational site, an educational DVD about Leukemia, as well as TeenConnector.ca, all of which can be accessed through the main childhoodcancer.ca site.  The President of TEVA Novopharm, Barry Fishman, is a Board of Directors member for The Childhood Cancer Foundation.

When I asked David Windross, V.P. External Affairs at TEVA Novopharm, why TEVA Novopharm decided to sponsor the Childhood Cancer Foundation initiatives, including TeenConnector, here was his response;

“We participate in the Childhood Cancer Foundation initiatives, including  TeenConnector,  because the initiatives relate to one of our Corporate Values of Corporate Citizenship – we are in the business of producing high quality affordable generic medications and our work with the Childhood Cancer Foundation connects our corporation and our staff to a very important initiative that connects patients. We look forward to the success of the TeenConnector program and our continued work with the Childhood Cancer Foundation .”

JAAN Technologies set up the network and are still involved in supporting and updating it.

Brother Canada committed funding of Lauren’s role within the non-profit organization as well as 10 yearly scholarships totalling $50,000 per year for 3 years in a row.  Lauren is a coordinator as well as a mentor on the site.

Is the network promoted in hospitals?

The network is still new and the promotional activities are just starting.  The plan is to promote the TeenConnector.ca online community to hospitals, cancer camps, teen & survivor conferences, as well as colleges and middle/high schools.

As seen below, promotion cards were developed by Parul Musaddy.  These will be sent to all Canadian children’s hospitals.

Is there any monitoring or editing of the content posted by the members?

There is some supervision of the content on the public blogs and discussion boards.  For example, if a teen or mentor provides or asks for medical advice, or opinions on treatments, they would be contacted and asked to edit or remove their comment.  If no action is taken by the member, then JAAN technologies would be requested to remove the comment in question.

Are there any advertising or sponsorship opportunities on the teenconnector.ca network?

There is no advertising opportunity as The Childhood Cancer Foundation does not want their teen members to feel overwhelmed with additional information or influences.  However, organizations can sponsor the online network, and as recognition they will have their logo on the homepage of The Childhood Cancer Foundation’s website.  Note that since TEVA Novopharm is already a major sponsor, another generic pharma company would not be allowed to sponsor as well.

Interested in discussing sponsorship or partnership opportunities with TeenConnector.ca, then please contact Mary Lye (mlye@childhoodcancer.ca), (416) 489-6440 ext.19 .

Also, there is currently a job opportunity for somebody who would like to help promote and support the organization.  Nope, we’re not talking about volunteer work.  This is an actual paid-job.  Contact Mary Lye for details.

DISCLOSURE: I have not been paid to write this article, and the organizations mentioned are not clients.

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Every day of this week, a Canadian healthcare social network (online community) will be featured on this blog.  Tomorrow, we will take a look at an online community for Canadian patients of all ages who are suffering from various cancers, where online educational events take place on a regular basis.  Come check it out.

Stay in touch,
Natalie

Connect with me on the following networks:
FaceBook, Twitter, LinkedIn

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To ensure that you receive all new updates to this blog, insert your e-mail address in the box in the top-right corner. Your e-mail will remain private and will not be shared with any third parties.

Upopolis: Social Media for Kids in Hospitals

Over the next week, I will be writing a blog series focusing on several Canadian healthcare online social networks.  This is part 1 of 5.

I chose Upopolis™ as my 1^st write-up because it was the network that inspired me to write the series.  You may have heard of Upopolis in December 2009, when Sick Kids Hospital announced that they had launched the online community in their facility.  It was the first time that I had heard of Upopolis.  As a Mom who has always worked in pharma and is passionate about using social networks for healthcare purposes, I was really excited about this brilliant application of social media and was immediately driven to learn more about it.  Basile Papaevangelou, chairman and founder of Kids’ Health Links Foundation took the time to share his insights with me regarding the Upopolis network.  Highlights of the discussion are found below;

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What is Upopolis?

Upopolis is a specialized online, private community designed specifically for hospitalized children.  Involvement in the network allows the children to develop and maintain a personal blog and communicate (chat online, take part in discussion boards, and e-mail) with other children who are members of the Upopolis community as well as approved external parties, including their friends, relatives, teacher and classmates.  The children can also play fun games, access homework, and use the network as a method of accessing kid-friendly information about their medical condition.  The medical information was written by Child Life Professionals at the McMaster Children’s Hospital. It was also reviewed, vetted and approved by doctors, clinicians and specialist in each area (eg leukemia, MRI, etc..)

A Canadian Teen Social Media Fact:

It is no surprise that children and teens are involved with social media, but   an Ipsos Reid study released in June 2009 confirms that Canadian teens are embarking on online communities at a rapid rate;

“Over three-quarters (76%) of online Canadians teens aged 12-17 now have a social network profile, up from 50% in 2007.”

So it’s no wonder that a system like Upopolis can make most children and teens feel a bit more at home during their hospital stay.

And in case you are wondering, the ages of the children using the Upopolis network range from 8 to 17 years old +364 days. Once they turn 18 years of age, they would be treated in adult hospitals where privacy and security with respect to Internet access is very different.

When was it launched?

The network became available to a handful of patients in 2007 at McMaster Children’s Hospital.  During this period, time was spent working on solutions to fix bugs in the system and improve its overall functionality.  The official launch took place late 2008.

How many hospitals use Upopolis – in Canada and US?

Currently, Upopolis is only available to Canadian children’s hospitals.  Typically, 20 laptops are provided per site.

• Sick Kids Hospital – December 2009
• IWK Health Centre – October 2009
• Lutherwood (hospital for children with behavioural challenges) – October 2009.  A unique version that is specific to these children’s needs was provided, where there is no playing or interacting within the broader Upopolis community.
• Children’s Hospital of Eastern Ontario – May 2009
• BC Children’s Hospital – April 2009
• McMaster Children’s Hospital – Official full-scale launch in 2008
• McMaster Children’s Hospital – December 2007

The Kids’ Health Links Foundation is planning on launching Upopolis at 4 or 5 other Canadian children’s hospitals in 2010.

At the moment, the objective is to reach all Canadian children’s hospitals before launching in a U.S. children’s hospital.  There are so many hospitals in the U.S. that could benefit from this system, yet the Kids’ Health Links Foundation is just a tiny organization and such a task would be quite overwhelming.

However, the good news for U.S. children’s hospitals is that the Kids’ Health Links Foundation is prepared to discuss the use of Upopolis with American philantrophic organizations who would like to take leadership of the network in their own country.  Organizations in the U.S. who might be interested in this opportunity should contact Basile at Kids’ Health Links Foundation, (905) 817-1717, basile@kidshealthlinks.org.

What is the cost to the hospital or the children’s families for the use of Upopolis in the hospital?

When the Kids’ Health Links Foundation came up with the concept of Upopolis, their intent was truly philanthropic.  They partnered with organizations that agreed to help them achieve their goal of providing Upopolis as a free service to the hospitals and the children’s families.

Big applauds go to the following generous players who provide the free, high quality, goods and services which make a difference in many children’s lives;

TELUS hosts, installs, trains, supports, trouble shoots, provides assistance via their help desk, manages upgrades, and implements risk management, all at no charge.   TELUS originally developed the network’s software.  They continue to improve it based on feedback.  At the time of writing this blog post (January 2009), the Upopolis network is in its 4^th version.  The changes that have been made along the course have made the network richer and more fun for the children.

As an aside, congratulations to TELUS for being named the top philanthropic corporation for 2010. TELUS is the first Canadian company to ever receive this global honor.  You will notice that TELUS is also a sponsor of the Canadian healthcare online community that will be featured later this week as part of this blog series.

Toshiba provides, at no cost, specially equipped and sanitized laptops.  Typically 20 laptops are provided per hospital that signs up with the network.

All creative work is done at no charge by Polar Unlimited. Here are just a few samples of the teaser and launch posters that they developed, which are used by hospitals that sign up with the network;

The intent is for Upopolis to have a therapeutic component while the children are in the hospital.  Therefore, not only is there no cost to the hospitals or users of the network, but Kids’ Health Links Foundation also fundraises and donates $50,000 to each participating hospital to assist them in integrating the Upopolis project into their delivery of psychosocial care.

You or your organization can help the Kids’ Health Links Foundation continue to provide this grant to the hospitals.  Donation details are found on their website, and click on “Donate”.

Can the children continue to use the software after they leave the hospital?

The laptops stay at the hospital and as children check into the hospital, they can be assigned a username and password and gain access to one of the available laptops.  There are exceptions.  For children who return to the hospital on a regular basis (ie. dialysis), Upopolis maintains their registration and password on the network so that they can access it from home.  For children who have checked out of the hospital and have formed a network with other children within the closed network, they can be given 30 or 60 days where they can continue to remain in contact with their new friends.  This should give them enough time to set up new mechanisms to stay connected online.

Why not use a mainstream online community?

Several hospitals have firewalls, which prohibits the use of external sites such as FaceBook.  However, there is an even more important reason why children’s hospitals prefer to use a system like Upopolis; it is child-specific and parent-approved.

Upopolis provides e-mail and blog features, but only within the community of Upopolis or by invitation.  To invite an external contact, the child must provide the hospital with a list of external people that he or she would like to invite.  Parents give the hospital permission to set up the external contacts, and then a hospital staff person sends out the approved invitations on behalf of the child.

Is there any monitoring of content?

Security of the network is of utmost importance to Kids’ Health Links Foundation, Telus, the hospitals and of course the families of the children using the network.  Basic security is achieved by permission and acceptance of terms of use.  There is also a sophisticated software, a real-time watch-dog tool, which blocks the children from accessing certain information through Google.  There is also a daily report on activities, sites accessed, file sizes received from friends and downloaded, use of inappropriate language.  Moreover, there also is a real live ‘Web Mother’, who sits on top of the action and watches in real time for exception reports out of the system that flag unusual activities, language etc.  The web mother is Glyn Ganong the mother of Katie McDonald, Basile’s daughter’s friend who was one of the inspirations for UPOPOLIS.

At the end of the day, account holders that use inappropriate words are identified and contacted to ensure removal of the inappropriate comment.

Can medical marketers promote their brand or corporation with the Upopolis network?

There is a strict ‘no advertising’ policy on the Upopolis network.  However, if an organization is planning on partnering with children’s hospitals or wishes to be recognized as an organization that genuinely wants to support children’s causes without promotion, then you might want to consider a donation to help support the incorporation of the Upopolis in one or more of the remaining Canadian children’s hospitals.  The Kids’ Health Links Foundation would support public recognition, such as press releases, for such donations.

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After having heard all this information, I can only see upsides for the hospitals and the users of the network.  The Upopolis network is truly a philantrophic project, one that will benefit many hospitalized children across Canada.  As Basile puts it, “it is a project from the heart.”  Best wishes to all parties involved in the Upopolis project – keep up the great work!

DISCLOSURE: I have not been paid to write this article, and the organizations mentioned are not clients.

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Every day of this week, a Canadian healthcare social network (online community) will be featured on this blog.  Tomorrow, the featured online social network is also targeting teens, but specifically teens who have or have had cancer.  So please make sure to check in.

Stay in touch,
Natalie

Connect with me on the following networks:
FaceBook, Twitter, LinkedIn

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To ensure that you receive all new updates to this blog, insert your e-mail address in the box in the top-right corner. Your e-mail will remain private and will not be shared with any third parties.