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

Empowering Patients - Making It Different in the UK

Dr. David Pearce is a Self Management Support Fellow with the Health Foundation in the UK. He is the Clinical Lead for the Co-creating Health team in Torbay in south-west England, part of a multi-centre programme, initiated by the Health Foundation, to promote self-management and collaborative working between patients and health service staff.

Though this programme has many facets, uppermost in my mind at present is a patient whom I saw in my clinic just last week.  My first question to her was something like, “So, what’s brought you here today?” and she replied “Well, I don’t really want to be here; it’s to stop X (another health professional that she sees regularly) going on at me about it.” 

This was a lady who was intelligent, independent and articulate but her long experience of the health service had somehow led her to a position where she had become a recipient of care she didn’t want. Yet it could have been different. By empowering patients and collaboratively setting goals based on a jointly set agenda, we can release the greatest underused resource our health services have, the patients themselves. I have been involved in training staff in techniques to promote this collaborative working, which we call the Advanced Development Programme.  Our aim is to promote a shift in the balance of power in the health service towards each contact between patients and health professionals being a meeting between two equal and complementary experts.  Here I mean the health professional being an expert on the condition, and the patient being an expert on themselves and their own particular needs and values. 

However, after years of new initiatives, many health service staff are undergoing "change fatigue," which is exacerbated by the current financial stricture.  In this climate, the danger is that our clinician training becomes just another course, which is quickly forgotten. Yet we have now trained the vast majority of local primary care doctors and our most effective advertising has been past attendees. They have found that working collaboratively with patients brings genuine improvements in their job satisfaction.

Using these skills, doctors have told us of their ability to help previously 'stuck' patients to move forward.   One talks of being able to finish their clinic on time for the first time in their career by using joint agenda setting.  Even very simple, small changes in the doctor-patient interaction can produce big improvements and financial savings.  For instance, considering the patient above, as part of the training we encourage doctors to ask, "Would you like to be referred to..." as opposed to saying "I am going to refer you to ...". Using advice like this led to one practice having a 30% reduction in secondary service referrals for mental health.

Whilst we are only a small team in Torbay, we have shown that the use of self-management techniques can produce positive changes in patient health, clinician job satisfaction and financial savings.  We are passionate about self-management and its promotion and would welcome comments or questions. My email address is: david.pearce3@nhs.net.

New Health Council Report - Self-Management Support (SMS) for Canadians with Chronic Conditions

Patrick McGowan, PhD, is a professor at the University of Victoria - Centre on Aging, and Director of Self-Management Programs. He has been implementing and researching SMS programs for 26 years and trains health professionals to use SMS strategies. Patrick participated on the Expert Advisory Panel in the development of this report.
 
This report really does represent the collective wisdom on self-management support. Being relatively new in Canada (less than 25 years), there has been confusion of what it is and how it is implemented. This report provides a good description of what is known about SMS. It highlights emerging, promising, and leading practices, and makes a few clear recommendations.
    
Why is SMS important?
SMS is important because people with chronic health conditions usually need education, coaching, and other interventions to help them gain knowledge, skills, confidence, and motivation to manage their condition. SMS can take place at three levels: the patient and family level; the primary health care provider level; and at the health system manager and policy-maker level. Self-management support is an integral component of the Chronic Care Model and should be anchored in primary health care.

SMS delivered to Groups and Individuals  
At the patient and family level, SMS programs tend to be more successful if they are integrated into primary health care, address multiple chronic conditions, and involve informal caregivers. Accessibility is enhanced if the programs can be delivered on a one-to-one and group basis, can be delivered in the home and in community settings, are available in person (e.g., peer coaches), by telephone or online, and are targeted to underserved populations.  Some SMS programs are delivered by volunteers, while others are led by both health professionals and volunteers. It is important to acknowledge that a single model for self-management support is unlikely to reach all people and a range of programs will be needed. The Health Council of Canada has established criteria to categorize innovative practices as emerging, promising, or leading practices. The Stanford Chronic Disease Self-management Program, currently offered in most Canadian provinces and territories, was designated a LEADING PRACTICE program.

SMS provided by health providers
Health care providers can deliver SMS by using behaviour-change strategies as part of their regular practice. Various models are available, such as: The 5As, The Flinders Program, Motivational Interviewing, and each includes shared decision-making between patients and health care providers and strategies to help patients develop skills. Shared medical appointments (a.k.a. group visits) is another SMS strategy. These are led by health professionals and combine clinical care, self-management support, and peer interaction. Group visits also provide active follow-up and link patients to evidence-based community programs. The report found that primary health care providers need more focus on learning and using these strategies in their practice. The Health Council of Canada designated the 5As model a PROMISING PRACTICE.

Can SMS be delivered online?
Online SMS programs currently exist and hold promise as a method of delivering various kinds of SMS, but there are concerns about a “digital divide” between patients and caregivers who are able to use this technology effectively. It would be a great way for people with chronic conditions to share information, provide emotional support to one another and communicate with health providers. However, as it is still early days in the evolution of online tools for self-management of chronic conditions and questions and concerns persist.

A System-Wide Approach to SMS
In the UK, a group SMS program called the Expert Patients Programme (a version of the Stanford CDSMP) had been widely delivered for some years, but the program was achieving only modest results. Therefore, to create a whole-system approach, the UK Co-creating Health initiative was undertaken. It is an innovative approach providing a systematic linkage through primary health care: clinicians refer patients to the community-based self-management programs, patients are engaged in process redesign with their primary health care providers, and their providers receive advanced training in communication tools and techniques to support the self-management process. The Health Council designated Co-Creating Health: An integrated approach to self-management support as an EMERGING PRACTICE.

SMS Policy in Canada
Canadian governments have made forays into building SMS into their chronic disease strategies; some have gone further and are integrating information and tools for SMS into primary health care, to embed the principles of SMS across their health systems. If successful, patients will have a better quality of life, primary health care providers will have the tools and time to help patients succeed, and resources that once went to treating preventable complications can be reinvested in a range of other critical services that support a healthy population.  The opportunity to invest in SMS at the individual and population health levels holds the promise of big dividends in improving the health of Canadians and the sustainability of our health care system.
The Health Council recommends that health care systems across Canada move actively to provide self-management supports in a more systematic way by:
1)    creating an integrated, system-wide approach to self-management support;
2)    enabling primary health care providers to deliver self-management support as a routine part of care;
3)    broadening and deepening efforts to reach more Canadians who need self-management supports; and
4)    engaging patients and informal caregivers as a key part of any systematic approach.

Your feedback and comments...
pmcgowan@uvic.ca

Op-ed highlights creative solutions to addressing surgery wait times

An op-ed this week by Cy Frank, expert adviser with EvidenceNetwork.ca and executive director of the Alberta Bone and Joint Health Institute, discussed creative solutions to reducing surgery wait times.

He used this analogy:

“Sometimes public health care is like the human body. When you have an ailment in one area, you need to look somewhere else in the anatomy for the cause or the contributor”

As we discussed in an earlier blog post, long waits are symptoms of wider system issues. This article demonstrates how effective setting measurable goals and targets can be. In this case, by using multidisciplinary teams and incentives to reach a benchmark, preliminary results are suggesting that this strategy has saved bed-days and improved wait times.

Read the op-ed here, and check out our Progress Report 2011 that reports on progress provinces and territories have made toward meeting the national wait time benchmarks that came out of the First Ministers’ 2004 Ten Year Plan.

Home Care - We need to translate findings into real solutions

Kevin Mercer is the Chief Executive Officer of the Waterloo Wellington Community Care Access Centre in Kitchener, Ontario. He is the Editor-in-Chief of Healthcare Management Forum and was a member of the expert panel for Seniors in need, caregivers in distress: What are the home care priorities of seniors in Canada?

First of all, if it hasn’t been said, it needs to be said – kudos to the Health Council of Canada for recognizing the importance of home care and publishing this report.  After working for 20 years in home and community care, you realize that despite the compelling research on the value and the importance of home care, policy papers and policy shifts have not kept pace with the directional advice of the research.  As a society, we have remained committed to a health care model developed predominantly in the 1950s.

The Health Council of Canada’s Seniors in need, caregivers in distress: What are the home care priorities of seniors in Canada? reminds us on the one hand how far we have advanced with home care services and on the other hand how far we have to go.  We have a long ways to go and some very vulnerable people are depending on us to do it.  This report puts a face to the policy issue and redefines “home care” from a “nice-to-have” substitute to acute care and long term care to an essential prerequisite to maintaining the health of both seniors and the caregivers.  We have made assumptions about the availability and the capacity of caregivers at home.  The report reminds us that these are flawed assumptions and we need to recognize the caregiver burden and provide more assistance.  The report tells us that the caregiver situation in terms of the ageing population is going to continue to grow.  The negative effects, if remedies are not implemented, are going to be felt in the health system and in the work force.  Caregivers are going to increase in numbers and so are the distress levels if action is not taken and soon.

In many respects, the Health Council report provides a picture that many of us have understood intuitively for many years.  Our front line staff, the advocates for seniors and caregivers, has articulated very well the caregiver burden they witness as they try to assist home care clients and families.   However, the empirical evidence has never been as clearly demonstrated as it has in this report.  Thanks to Dr. John Hirdes and his team of researchers, the RAI-HC data has been assessed and a scientific validation of the caregiver burden is provided.  The value of the RAI assessment data in this report is instructive in helping us appreciate the needs of home care clients.  Governments have often challenged the field to provide the data that supports claims of increased acuity demands in the community.  This report provides the evidence as illustrated in this quote.

“About one-third of the seniors in our analysis of home care recipients have high needs, often involving both physical disability and cognitive impairment such as dementia.  Despite this, they may receive only a few hours more of publicly funded home care each week than seniors assessed with moderate needs.”

The challenge for all of us now is to translate the findings in this report into real solutions for vulnerable home care clients and their caregivers.  At least in Ontario a commitment to home care of a 4 percent per year budget increase for the next three years is a step in the right direction. 

This is positive news and if there was any question as to the need, one just needs to read Seniors in need, caregivers in distress: What are the home care priorities of seniors in Canada?  A very timely report.

PLEASE NOTE: On May 9th, the Health Council of Canada held a webinar Canadian Home Care Priorities for Seniors: What Can We Learn From Australia? with our special panelists:

• Jeff Fiebig, Manager, Program Development of the ACH Group in Adelaide, Australia
• Pamela Fralick, President and Chief Executive Officer of the Canadian Healthcare Association
• Nadine Henningsen, Executive Director of the Canadian Home Care Association

The webinar expanded upon many of the issues presented in our recent report, Seniors in need, Caregivers in distress: What are the home care priorities for seniors in Canada?

You can download the PowerPoint presentation or listen to the webinar.

Home care: it's about people, families, and their perspectives – not ours

Dr. Paul Holyoke is the director of Saint Elizabeth’s research department, which has an extensive applied research portfolio across five themes:  client experience and person-centred care, health system innovations, use of evidence, clinical interventions in home care, and innovative research methodologies.   

This report emphasizes how important it is for older Canadians to be able to remain in their homes.  As the focus shifts more to home care, we need to realize that people don’t simply want facility-based care at home. 

In a research project funded by Saint Elizabeth and the Canadian Health Services Research Foundation, I talked with home care clients and heard what makes a difference for them.  This video from the project captures in their own words what they want in home care. They tell us care should be personalized, flexible and delivered at a pace that responds to people’s needs and preferences. Care should honour and enrich people, their homes, their family members and caregivers, their memories of the past and their hopes for the future.  In short, people want and need more than help with activities of daily living. 

It’s essential to listen to these perspectives and ensure home care is truly client-centred, not task-centred. While all services in the home, whether personal care, home support, nursing or rehab, need to follow a care plan as a guide to achieving goals, we must recognize that people’s needs, priorities and preferences frequently can change. All home care providers require the flexibility and support to respond to the most important needs as expressed by people themselves, day by day.

The growing focus on home care is a great opportunity for us to share our knowledge, apply person-centred approaches, and reflect people’s preferences and perspectives in all we do.  If we accomplish this, we’ll optimize the potential of this shift for everyone.

PLEASE NOTE: On May 9th, the Health Council of Canada held a webinar Canadian Home Care Priorities for Seniors: What Can We Learn From Australia? with our special panelists:

• Jeff Fiebig, Manager, Program Development of the ACH Group in Adelaide, Australia
• Pamela Fralick, President and Chief Executive Officer of the Canadian Healthcare Association
• Nadine Henningsen, Executive Director of the Canadian Home Care Association

The webinar expanded upon many of the issues presented in our recent report, Seniors in need, Caregivers in distress: What are the home care priorities for seniors in Canada?

You can download the PowerPoint presentation or listen to the webinar.