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Canadians, FaceBook and Healthcare

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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;

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.


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.


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!

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CaringVoices: Princess Margaret Hospital Offers Online Support for Cancer Patients

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;


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;

What is CaringVoices.ca?

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 (sara.urowitz@rmp.uhn.on.ca or caringvoices@rmp.uhn.on.ca ), 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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Do Canadian patients trust others like them?

Next week, I will be posting a blog series on Canadian healthcare social networks; 1 network reviewed per day! These are online communities where Canadian patients (and sometimes patients from other countries as well), share healthcare-related, and sometimes very personal information with one another.

As such, I was interested in learning more about how Canadian patients who connect with one another on online communities trust the information that they are receiving from one another. My immediate thought was to connect with the Edelman group.

If you have ever talked with somebody who either had been diagnosed with a similar disease or was taking a similar treatment as you, did you trust the information that you were given by that person? Chances are pretty good that you would have trusted the information given by that person, but not as much as in previous years.

The 2008, 2009 and 2010 Edelman Trust Barometer reports confirm this.  Trust in a “person like yourself” has decreased from 2008 to 2009 (as have most information sources listed in the report), and dropped again in 2010. From the global 2010 Edelman report, 44% of respondents aged between 25-64 years said they would find the information from a person like them to be either ‘very credible’ or ‘extremely credible’ (down from 47% in 2009, and 58% in 2008).  That’s a huge drop over the past 3 years!

Edelman 2010 Trust Barometer

Interestingly, the “person like yourself” is the only group that actually decreased in trust from 2009 to 2010. All other information sources either increased in trust or remained the same.  It makes you wonder what happened to make us lose so much trust in people similar to ourselves.  Unfortunately, the Edelman report does not give an answer to this question.  They do provide insight though, regarding the increase in trust in the other groups;

“In a volatile year, it seems that informed publics value guidance from credentialed experts over a “person like me,” which lost ground as a credible voice of information for a company (figure 8). This desire for substantial information points to why academics and experts, and financial or industry analysts are the most trusted spokespeople for a company.”

But do these global statistics reflect Canadian trust?

The Edelman reports provide global and some country data, but do not break down any Canadian data. The Edelman group in Toronto agreed to dig up the Canadian information for me.  However, at the time of publishing this post, the 2010 Edelman Trust report had just been released a few days prior, and the Canadian data was not yet available.  It should become available within the next 2 months, and the Edelman group in Toronto has promised to send me some Canadian statistics as soon as possible (yup, I`ll be posting that info for you as soon as I get it).

But in the meantime, the Edelman group in Toronto was kind enough to send me some Canadian statistics from the 2009 report;

In 2009, the global trust in a “person like yourself” was 47%, whereas the Canadian trust in a “person like yourself” was 49%.  OK, so Canadians scored a bit higher, but not by much.  It will be interesting to see what the 2010 report shows, particularly whether the Canadian score will have increased or decreased, or stayed the same over time.

Another point to keep in mind is that a “person like yourself” is not the same as a “patient like yourself”. The Edelman report does not specifically discuss trust in health issues from a “person like yourself”.  Talking about sports gear with another sports fanatic is very different than talking about your cancer treatments with another patient.  Medical information can be so technical, yet healthcare can be a very personal and emotional topic for patients.  Who knows!  Perhaps patients with newly diagnosed diseases or prescriptions might have greater, or perhaps much less trust in another “patient like yourself”.

Can we answer the question whether Canadian patients trust others like them?  Not entirely, at least not from this report.  I think we can infer from the 2009 data that there definitely would be some level of trust.  But to what level would we trust other Canadian patients, and how would this compare with other information sources?  Those questions remain unanswered, at least from this particular report.

Another study by Essential Research Inc., Essential Healthconsumer, which was implemented in 2008 and published in 2009, suggests that more than half (57%) of Canadian healthcare consumers have greater trust in Canadian sites, whereas 36% trust all (Canadian, American, International) sites equally.  However, only 14% of Canadian healthcare consumers who found healthcare information online actually shared it with others online.  So it appears that having a Canadian online community might enhance the trust of its members.

The 14% of Canadians willing to share their findings seems a bit low when compared to the Social Technographics Profile tool, which suggests that 18% of Canadian adults are ‘creators’ and that 29% are ‘critics’ (ie. participate in online forums) on social media.  You can learn more about the Social Technographics Profile here.

I have two theories as to why this might be, but they remain untested opinions, so take it with a grain of salt;

1) This could be a result of the difference in timing of the two studies.  The Essential HealthConsumer data was gathered in November / December 2008, whereas the Social Technographics Profile tool includes 2009 data.  Social media is evolving quickly, therefore the time difference in collecting the data for both studies could be the reason for the discrepancy as more and more people are becoming familiar and comfortable in using social media.

2) Moreover, similarly to the earlier argument that a ‘person like yourself’ is different than a ‘patient like yourself’, the Essential Research data is related to sharing of healthcare information online, whereas the Social Technographics Profile is related to general postings and comments made on social media.  Healthcare is very personal and can be emotional, therefore one might expect to see fewer Canadians willing to share such sensitive information online with others.  But that very same person might be quite comfortable in sharing information about the new pair of shoes that he or she just bought for a bargain.

And finally, the type of disease state involved might influence whether Canadian patients trust other patients like them enough to share information with them online. Although not Canadian-specific and not trust-specific, the North American Technographics Benchmark Survey of 2008 (Source: Forrester Inc. Research;  blogs.forrester.com ─ April 22, 2009) suggests certain disease states that participate the most, and might benefit the most from online communities (see top right quadrant on chart below).

The upcoming Canadian healthcare social network blog series might provide some qualitative information about how much Canadian patients trust others like them. You will notice that the level of member activity on these online communities varies.  As you review these various online communities next week, keep in mind the type of disease state involved, the age of the typical members, the various features that facilitate the online discussions, and the sophistication of the management of the networks (most of the networks to be featured are managed by non-profit medical organizations who are juggling funding and personnel with multiple organizational objectives).  This might help us better understand why some medical online communities seem to be more effective than others.  Hopefully the series will stimulate some thought and discussion, and maybe even motivate some strategic partnerships.

Let us know your thoughts on whether Canadian patients trust others like them  by writing a comment.


A big thank you to the Edelman group in Toronto for their speedy responses and feedback.  I was truly amazed at their level of customer service.  (Thanks to Scott Evans and Lisa Kimmel for all your help!)

As well, many thanks to Essential Research Inc. for giving me permission to share some of their insightful Canadian data.  (Thanks to Don Lajoie for his ongoing support and passion in sharing information about Canadian and e-health.)


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ALGORITHM: Choosing the Appropriate Canadian Healthcare Regulatory Guidelines

As a pharmaceutical marketer, you need to be creative and innovative to achieve your brand’s strategic and financial objectives, but you must do so while staying within the regulatory guidelines.  In Canada, there are several sets of regulatory guidelines and codes that relate to Canadian pharma / healthcare advertising and promotion.  How do you know which ones to follow for which circumstances?

Patrick Massad, the Chief Review Officer at the PAAB, presented an algorithm at the “Social Media Marketing in Pharma: What Works in Canada” workshop, which is meant to help identify which set of guidelines to follow in certain circumstances. A modified version is found below.

When in doubt, contact the various regulatory bodies and explain your specific situation to determine which organization is responsible for clearing your advertising / promotional collaterals and campaigns. Note that the Health Canada Food & Drugs Act is the basis for the policies, guidelines, and regulations on drug advertising. Regulatory bodies enforce these.


Rx and Schedule D product

Non-prescription / Natural health product

Promoting to

Healthcare Professionals

Pharmaceutical Advertising Advisory Board (PAAB)

Pharmaceutical Advertising Advisory Board (PAAB)

Promoting to


(have a prescription for the product)

Pharmaceutical Advertising Advisory Board (PAAB)

Pharmaceutical Advertising Advisory Board (PAAB)

Promoting to


Pharmaceutical Advertising Advisory Board (PAAB)


Advertising Standards Canada (ASC)

can provide an opinion on behalf of Health Canada

Advertising Standards Canada (ASC)


MIJO (Formerly BCA)


For those who are curious, the following is a list of promotional guidelines for some other countries;

Medicines Australia

Medical Technology Association of Australia

Agência Nacional de Vigilância Sanitária (Anvisa) / (Brazilian Health Surveillance Agency). Promotional guidelines in Portuguese only.

Danish Medical Association (LF), Danish Pharmaceutical Association (DA), Danish Association of the Pharmaceutical Industry (Lif), Danish Generic Medicines Industry Association (IGL), Parallel Importers of Pharmaceuticals (PI)

Europe: European Federation of Pharmaceutical Industries and Associations (EFPIA)
EFPIA Code on the promotion of prescription only medicines to, and interactions with, healthcare professionals

EFPIA Code of practice on relationships between the pharmaceutical industry and patient organisations

Les Entreprises du Médicament (LEEM)

United Kingdom:
Association of the British Pharmaceutical Industry (ABPI)

United States of America:
Pharmaceutical Research and Manufacturers of America (PhRMA)

Division of Drug Marketing, Advertising, and Communications (DDMAC)

Advanced Medical Technology Association

Note that I am not a pharmaceutical regulatory expert.  I am providing these resources as a service to my blog’s readers.  If you have specific regulatory questions, please contact the appropriate organization.

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Canada’s Online Health Check – Online Hotspots to Connect with Canadian Pharma Professionals

Last week, I shared with you the results of a recent survey that looked at some high-level trends of where and how Canadian pharmaceutical professionals are using social networks.

Since networking and collaborating with colleagues can have a significant impact on our professional lives, I wanted to follow-up on my previous post with highlights of a few groups within LinkedIn, FaceBook and Twitter that may assist Canadian pharmaceutical professionals to find and network with one another.  Note that some of these groups offer greater networking opportunities than others, but I will leave it to you to check them out and decide which is best for you.

GIVEAWAY: In the spirit of networking and sharing, I have saved 6 Google Wave invitations to share with 6 Canadian pharma colleagues (client or agency, but must be involved in the Canadian pharmaceutical industry).  Google Wave is a collaborative online tool, which at the moment is only available to those who are invited by somebody already on the network.  How to enter this giveaway contest?  Write a comment on this post.  Since I only have 6 invitations left, if more than 6 people write a comment, then we’ll have to make it a draw in which case everybody who writes a comment will be given a number (ie. the 1st to write a post is assigned the number ‘1’, and so on) and then will be randomly selected with the use of the random number generator Random.org.  The monetary value of this giveaway:  a big, fat $0.00 .  So why am I bothering? The intent is to share this tool with others who truly want to collaborate with their colleagues online.  What better way to find out who these people are than to just ask them to ‘raise their hand’ online.  Plus, once you are on Google Wave, then you get a bunch of invitations to send to your friends as well.  What a great way to connect, share and collaborate with one another.  Deadline is Sunday December 13th, 11:59 pm.  Draw (if required depending on number of comments) and invitations will take place on Monday December 14th.


Biotech and Bioscience in Canada

Canadian Health Informatics

eCHE and eMarketing Insider

Market Access for Canadian Pharma

Ontario Pharmaceutical Marketing Association (OPMA)

Pharmaceutical, Biotech & Medical Devices Jobs in Canada



Biotech/Pharma/Medical Device Careers in the United States & Canada


About a month ago, Twitter added a new “list” feature.  As part of these lists, Twitter users (tweeps) can select certain people that they are following as part of their lists and make the lists public.  You can give a name to the list, so tweeps who see your list will have an idea what it is about.  I have put together a ‘Canadian Pharma’ list that you may wish to peruse or follow.

The development of this list is ongoing as I find new people who meet the criteria and also as Canadian pharma folks join Twitter.  If you work in the Canadian pharma industry and are on Twitter but not on my list, please make sure to send me your username and I will add you to it.

Here are a few resources to help you find your Canadian pharma colleagues on Twitter:

1)      To find people based on their bio, you can use TweepSearch.com and insert the keywords that you are looking for.  This system is helpful, but not perfect because the search results will depend on the words used in people’s bio.  So if you are on Twitter and want to be found and recognized for certain keywords (ie. ‘pharma marketing’), make sure that they are part of your bio… and this includes your location too.  If somebody is searching for a ‘pharma marketing’ tweep in Canada, but your location is left blank, you will not show up as part of their search.

2)      To find people based on the content of the posts that they publish (tweets), you can either do a search directly in Twitter or use one of many search engines that track tweets.  I like to use IceRocket.com and WeFollow.com for this purpose, but there are many other sites that provide a similar type of search at no cost.

Although this is not a Canadian-specific resource, you might be interested in following pharma companies on Twitter.  If so, you can start by checking out Ignite Health’s dashboard.  In fact, the cool thing about this dashboard is that even if you are not on Twitter, you can still follow the more recent posts that are written by these pharma companies directly from the dashboard.


This is just a sample of the many groups that may be of interest to a Canadian pharmaceutical professional.  There is also a plethora of social networks with an international focus that might offer excellent networking opportunities with both Canadian and international colleagues (for example, just search “pharma” for LinkedIn groups and the list goes on and on).

If you know of other Canadian groups that were not mentioned in this post, but you think that Canadian pharma professionals would be able to connect and collaborate with each other by joining them, please leave a comment with the name and URL for the group.  And remember that your comment will be considered as an entry in the Google Wave invitation giveaway contest (as described above).

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