An award-winning Canadian video shows the potency of patient stories

Zal Press is Executive Director of Patient Commando Productions, an internet initiative dedicated to promoting the patient voice as a guide to practice change. www.patientcommando.com has more than 1400 patient experience stories. Zal has been living with Crohn’s Disease for over 30 years.

In a competition loaded with Hollywood celebrities, heavyweights like the Clintons, web giants Google+, Facebook and others, an unknown Canadian health charity emerged victorious in the annual Webby Awards competition. The David Cornfield Melanoma Fund production “Dear 16 Year Old Me” has set a new standard of storytelling in video by winning 2 Webby Awards, the leading international awards honouring excellence on the Internet.

The video won for Best Online Video - Public Service and Activism, and for Best Copywriting. It has been viewed almost 7 million times, in 150 countries, and in 5 languages. No other Canadian patient story in living memory has come close to this level of global social media impact.
Last October Daniel Stolfi, Canadian Comedy Award winner, delivered a compelling presentation about his cancer experience at the Health Council of Canada’s Patient Engagement Symposium. It was a powerful example of the impact of patient stories.

“Dear 16 Year Old Me” is another Canadian patient story, by melanoma patients who, through reflection, tell their 16 year old self some life lessons that can make an important difference in their lives. It’s a milestone in the history of healthcare when a patient story, told by real patients, outdraws a Hollywood celebrity doctor. It’s a story that can inform practice, change patient behaviour and improve public health.

This film wasn’t supported with a mass media campaign and major sponsors. It won the hearts of millions with an authentic narrative that engages its viewers with its honesty.  It is a textbook example of the potency of patient stories. Canadians have a history of listening to the patient voice. We’ve done it again and again. These voices move us and inspire us to action. Alongside other great Canadian patient models - change makers like Terry Fox and Rick Hansen - you’re going to start seeing the name David Cornfield. David died at 32, a young man with great promise. What he started in life is being fulfilled by his legacy, a film as inspirational and dynamic as he was, with the power to influence the actions of millions of people.

If you haven’t seen this remarkable film, take 5 minutes to see it here now and share it with your friends and family. If you have seen it, then watch it again and know that you are changing the world by sharing it with those who haven’t.

P.S. Patient Commando has a new whitepaper you may be interested in: “On a New Frontier of Patient Engagement; Promoting Collaboration One Story at a Time”.

Your self-management journey - it can be easy

Dr. Ahmad Zbib, CPHIMS-CA is the Manager of Consumer eHealth at the Heart and Stroke Foundation of Ontario. He is responsible for the management and development of Suite of online behavior-change tools such as the Heart& Stroke Risk Assessment. Ahmad has a great interest in both provider- and consumer-focused e-health technologies.

Have you been hearing the word “self-management” more lately? Did you know that you have been self-managing your condition and those of your loved ones for most of your adult life?
We are not going to explain what self-management is. For more information on that, check out the Health Council of Canada’s recent report.
What we wish to share with you are some strategies to make your self-management journey easier. The Heart and Stroke Foundation offers a suite of online tools to help you better “self-manage” your health.

FACT: Heart disease and stroke take 1 in 3 Canadians before their time. MAKE DEATH WAIT (video).

Start by learning your risk of heart disease and stroke. It is easy to do by taking our Heart &Stroke Risk Assessment. It will identify:
•    what is putting you at risk of heart disease and stroke; and
•    the actions you need to take to live a longer and fuller life. 

Once you know what you need to do, we recommend you ask yourself the following questions:
1. What motivates me? Write it down on a piece of paper and place it on your fridge to remind you when the going gets tough.
2. How important is it for me to change a certain behaviour that is putting me at risk for heart disease and stroke? Rate yourself on a scale of 1 to 10 where 10 is the highest. Do this for each of your risk factors.
3. How confident am I in changing my behaviour for each of the risk factors? Again, rate yourself on a scale of 1 to 10 where 10 is the highest.
4. Start working on the behaviour that is the easiest to change -- the one that is most important to you and that you are most confident in achieving.

FACT: High blood pressure is the number one risk factor for stroke and among the leading ones for heart attacks.

High blood pressure on your mind? We have an app for that. Check out our Blood Pressure Action Plan. This tool will help you achieve and manage a healthy blood pressure.  Tracking your blood pressure at home and recording it gives you and your healthcare team some of the information needed to get your blood pressure to your target.

FACT: Did you know that losing 10 pounds can lower your blood pressure up to 7mm Hg systolic/6 mm Hg diastolic?

If you want to shed a few pounds, our Heart and Stroke My Healthy Weight Action Plan™ can help.  Check out this video to see how.
Knowing your risks and taking action to reduce those risks will help to give you a longer and fuller life and…. MAKE DEATH WAIT.

For more tools go to: www.heartandstroke.ca/ehealth

The promise of online tools for self-management support

Neil Seeman is Senior Resident in health system innovation at Massey College in the University of Toronto, CEO of The RIWI Corporation, a ‘Big Data’ technology company, and CEO of the Health Strategy Innovation Cell, a non-profit research unit focused on online disease management tools.

At the Health Strategy Innovation Cell and The RIWI Corporation, my colleagues and I have been at work exploring the power of online interactions in healthcare. We are in the emergent era of this evolution. We are at the early stages of understanding the Web, just now learning, for example, how people with low literacy, poor English language skills, or little Web-enabled access can use the Web effectively.

Despite these challenges, they should be balanced against the promises, which are immense. We can better understand patient preferences by listening (ethically, on open space forums) to what patients need, want, and expect from their healthcare system. Often these are low-cost preferences. We can, for instance, better understand how the public reacts to certain information, such as vaccine information posted online. We can share collaboratively on best practices;  on how to use social media within and across healthcare organizations. We can learn about what the government considers to be the best role of government in setting different types of health promotion policies.

For the Health Council of Canada, research led to understanding that online, patients can control when and where they participate, and the technology can overcome isolation due to distance, weather, physical disability, family responsibilities, or discomfort with meeting in groups. Often patients who encounter heavily stigmatized conditions, such as HIV/AIDS or psychiatric conditions, are more active online – participating with caregivers and other sufferers – than they are in live interactions.

Whatever the promise of online interactions for self-management supports, this Health Council report underscores the importance of linking the clinical live interface with the online information tools.
Have you ever used a social network to manage your chronic condition? Would you? Would you recommend online interactions for a family member?  What are the opportunities – and barriers?

Contact information:
neil.seeman@utoronto.ca
http://www.linkedin.com/in/seeman