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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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8 Responses

  1. Nat, thank you for a very thought provoking post. I’m intriqued by why trust between persons has decresased in the past year. However, I believe trust between patients remains strong and will grow even stronger in the years to come. Like you Nat, I do not have any ‘data’ to back up my opinion, but I do observe in communities like http://www.patientslikeme.com a very strong commitment to share personal treatment and symptom information for the benefit of the patient community that far outweighs any ‘sensitivity’ about sharing personal health information. Further, I believe that this commitment to one another is going to get stronger as our frustration with the health care system grows. Patients and caregivers will be reaching out to one another in increasing numbers in large part because of the reduced support that they are getting from the health care system.

    One other thought about this notion of patient community. I believe, like Andrew Schorr, a 12-year leukemia survivor and ACOR community member, e-patient, blogger and radio host, that “it (community) should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones” This comment was found at http://e-patients.net/archives/category/others-epatient-stories

    Ian Gardner,
    Synapse Group

  2. I’m not sure if “trust” is the right word, but they definitely find solace in chatting with someone “like me”, someone who’s experience the same things/symptoms as me, especially for tabou diseases (i.e. depression, incontinence, etc). It’s comforting for the patient to know he/she is not going at it alone

    • Excellent point Elena. It would be interesting to see a study that looks at this. So many forums show the number of posts and number of views per discussion, and usually the views outweigh the posts by a fairly large factor. I wonder if those who ‘view’ only are getting as much comfort / reassurance as those who engage in the discussions. Social media and healthcare is such an interesting topic, and there is still so much to learn and discover. Thanks again for taking the time to share your point of view.

  3. Have you considered going to “patients” (a.k.a. people like you and me who happen to dealing with a health issue – never actually known anyone to call themselves a “patient”) to actually ask them this type of question, instead of trying to extrapolate assumptions based on mostly un-related data? Ask the people straight up, no?
    Patient associations could field your questions in their monthly newsletters. Heads of associations could give you POVs on the subject.

    Do patients trust patients??? Ask the patients, I say….

  4. Hi Nat,

    Good question. I think the answer, at the moment, as to whether Canadian patients engage with one another in online communities is generally no. When we talk directly with patients we find that they are interested in talking with other about the issues and challenges that they face, but most either don’t know where they can go, or don’t have easy access. The certainly engage with one another in a face-to-face setting.

    There is a certain level of skepticism of online communities, except in some very specific patient groups and demographics. Comments like “How do I know who those other people are?” seem common.

    As to the question of trust in others “like them”, we don’t have a good answer yet. Again, in person, they trust some of those “like themselves”, but don’t consider all those who have a common condition “like themselves”.

    They trust Pharma for information specific to their drug, but maybe not on their disease. They trust their GP to a certain degree, but trust specialists more. They trust nurses and pharmacists, but again with limitations. They trust “unbiased” medical sites such as the Mayo Clinic.

    This is still an area that needs a lot of focus, and patients’ needs are being underserved. Thanks for bring it to greater attention!

    • Thanks Steve. Your insights are very valuable as I know you are somebody who speaks (and listens) to Canadian patients on a regular basis. Glad that we can learn from your experiences.

  5. […] The value of joining the community is well established in the text;  sharing one’s experience with over 15,000 other people who are ‘like me’. […]

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