Accu-Check Engaging with Diabetes Influencers and Patients

In October 2009, Roche Diagnostics launched a Canadian social site called Accu-Check Diabetes Link.  Despite a rather clean and simple look, there appear to be several opportunities within the site to influence the user’s experience. There is the site itself, which encompasses;

• a blog:  You can subscribe to the blog via RSS or e-mail.  You can also share the blog articles, but you cannot add comments.

• links to various diabetes online resources: “What we’re reading”,

• diabetes news from online sources: “In the News”,

• a widget called ‘The NEST‘ which helps diabetes tweeps stay in contact with one another and even introduce themselves to the diabetes community on Twitter.  The NEST widget can easily be shared and posted anywhere online.  It was created by Ignite Health, Incendia Health Studios.

• as well as product and corporate information (see tabs at the top of the home page “Accu-Check Products” and “About”).

The site also leads the user to a few external Accu-Check social networks such as FaceBook, Twitter and YouTube.  There is some level of promotion of Accu-Check products and programs on all sites, but the YouTube channel appears to contain the most promotional content:

The FaceBook (under “Info”), Twitter and YouTube profiles all have a disclaimer to inform visitors that the information provided may not be approved or suitable for all countries;

What is the objective of the Accu-Check Diabetes Link site?

The motivation that eventually led to the Accu-Check Diabetes Link social site was to reach out to people with diabetes and help connect them to information and resources that could help them lead more healthy lives.

What steps did Roche Diagnostics take initially before implementing the social site?

In order to determine how to do this, the very first step that Roche Diagnostics took consisted of active listening.   In July 2009, 29 diabetes bloggers (diabetes POLs which Roche Diagnostics refers to as ‘D-Bloggers’) visited the Roche Diagnostics headquarters in Indianapolis.   The objective of this ‘Roche Social Media Summit’ was to better understand their concerns and discover areas where the bloggers and Roche Diagnostics could work together.  The bloggers’ feedback helped shape the Diabetes Link pilot program in Canada. It would be interesting to know which countries the 29 bloggers came from, and how many were from Canada.  But unfortunately I don’t have that information to share with you.

Other than the existing Canadian pilot site, are there other Diabetes Link sites currently available?

Roche Diagnostics has not launched another Diabetes Link site in any another country …. yet !  The Diabetes Link site is still fairly new, therefore it will take some time for the Accu-Check team to learn from the Canadian pilot and then apply these learnings to other selected markets.  But it sounds as though there are plans to launch similar sites in other countries.  (Thanks Roche Diagnostics for choosing Canada as your starting point !!)

Where do the site visitors come from?

According to Roche Diagnostics’ data, the site gets substantial global traffic, most of which comes from Canada.

How is the site being promoted to patients?

Traffic to the site is organically driven thus far, suggesting there is little if any promotion at all.  Although nobody at Roche Diagnostics told me this, I am assuming that the limited or lack of promotion of the site might be because this is a pilot site.  It will be interesting to see what type and level of promotion will take place when sites will be officially set up for bigger markets.

Why is there no ‘comment’ box in the blog posts?

Social media is a big step for a regulated company, and as recently seen with several recent pharma programs, there are certain risks in getting involved with social media.  Roche Diagnostics is keen on having having a conversation with their stakeholders, and they are interested  in providing the channels to allow their stakeholders to have discussions with one another on their site, but the decision has not yet been made on how to implement this.  They already have several social media channels to consider for this purpose, such as the Diabetes Link site, FaceBook fan page, and so on, and there are other options to consider as well.

How is ROI being measured?

As a pilot program, Diabetes Link is an experiment to discover the most effective ways to build relationships that are beneficial to the diabetes community as a whole.  Roche Diagnostics is hoping to get a better understanding of this before setting up ROI measurements.

What information did Roche Diagnostics senior management team need before approving this social media project?

They wanted to make sure that the organization had the resources needed to provide the community with helpful information and knowledge as swiftly and prudently as possible.

What departments are involved in managing this social media pilot program?

Marketing, PR, customer service, legal and regulatory have all been involved with this effort.  As Diabetes Link is a pilot program, resources are being pulled as they become necessary.  This will help Roche Diagnostics build a more formal management process for future sites.

Update April 12 2010, 2:00 pm: CONGRATULATIONS to the Roche Diagnostics and Accu-Check team for being nominated a finalist for the Dosie awards, in the Best Brand Sponsored Patient Community !!

————————————————-

Many thanks to Robert Muller (Social Media Consultant, Global Marketing, Roche Diagnostics, Diabetes Care) who provided me with some additional insights with regards to the Accu-Check Diabetes Link site.

Stay in touch,
Natalie

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

—————————————————–

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.

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;

• 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;

———————————————
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.

Stay in touch,
Natalie

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

—————————————————–

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.

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.)

————————————-

Stay in touch,
Natalie

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

—————————————————–

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.