Why We Need More Canadian Health Policy in the Media

By Eileen Boriskewich

Why We Need More Canadian Health Policy in the Media is a compilation of EvidenceNetwork.ca commentaries published in major newspapers in 2015, written by experts in the health policy field. These articles highlight the most recent evidence on a wide range of topics, including our aging population, healthcare costs and spending, mental health, pharmaceutical policy, the social determinants of health and distinctions between the Canadian and American healthcare system among other topics.This is the fourth volume in the annual series of eBooks produced by EvidenceNetwork.ca, the first being Canadian Health Policy in the News (2013), followed by Making Evidence Matter in Canadian Health Policy (2014) and Navigating the Evidence: Communicating Canadian Health Policy in the Media (2015) -- all available in multiple formats.

• Language: English
• Publisher: Hillcrest Media Group
• Release date: Jun 20, 2016
• ISBN: 9780995157309

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Acknowledgements

It takes a tightly knit team of regular contributors, interns, research assistants, editors, academic expert advisors and journalists to make EvidenceNetwork.ca possible, in day-to-day operations, and in the production of this eBook, the fourth in our annual series. In other words, there are many people to thank.

We are indebted to our independent media advisory committee who provide general guidance on our priorities and approach, and who act as a general sounding board for all that we do. Their time is valuable so we appreciate that they’ve donated some of it to our project. Our gratitude is extended to Gillian Steward, Journalist, Toronto Star and Part-Time Faculty, Mount Royal University; Ann Rauhala, Associate Professor, Ryerson University’s School of Journalism; Steve Buist, Investigative Reporter and Feature Writer, Hamilton Spectator; Dean Broughton, Chief News Editor, Vancouver Sun; Tom Blackwell, Senior National Reporter, National Post; new member, Cecil Rosner, Managing Editor, CBC and Adjunct Professor, University of Winnipeg; and out-going member, Janice Neil, Associate Chair, Ryerson School of Journalism.

A special thanks goes to Mary Agnes Welch who sat on the Committee from its inception until recently, when she departed from her job at the Winnipeg Free Press. She has had a remarkable career in public policy journalism, and her thoughtful and passionate reporting, and her support of Evidence Network, are greatly appreciated and will be missed.

We also have more than 80 academic experts to thank – from across the country and internationally – who field media interviews, author original material for publication in the mainstream press and participate in videos and podcasts, among other projects. Their expertise, presented in a non-partisan manner with a balanced take on evidence at the forefront, is the backbone of Evidence Network.

We’d also like to thank our newly added Panel of International Journalists, which includes Rita Araujo from Portugal; Amelia Beltramini from Italy; Trudy Lieberman from the United States – who came up with the idea for the panel and orchestrated its creation – Shaun Lintern and John Lister from the United Kingdom; Ray Moynihan from Australia; Ivan Oransky from the U.S.; André Picard from Quebec; and Rinke van den Brink from the Netherlands. These top-notch health policy journalists from around the world have offered to act as a resource for fellow journalists and health experts trying to understand health systems across borders.

We’d also like to thank our Evidence Network team for their on-going dedication and hard work making health policy matter by getting more health policy evidence into the mainstream media. Thanks to Website Editor and Administrator, Eileen Boriskewich; our Research Assistant, Nanci Armstrong; our Podcast and Social Media Editor, Mélanie Meloche-Holubowski; our colleagues from the George and Fay Yee Centre for Healthcare Innovation, Carolyn Shimmin, Knowledge Translation Coordinator, Kristy Wittmeier, Director of Knowledge Translation and Patrick Faucher, Knowledge Translation Media Specialist, who also work on the Evidence Network project when they are able. We’d also like to thank our Regular Contributors, Neeta Das McMurtry, Trudy Lieberman, Ann Silversides and Lee Tunstall. And our newest journalist intern, Dane Wanniarachige.

Colleagues who worked with us in previous years also deserve our sincere thanks for their continued support and for continuing to champion Evidence Network in their new endeavours. Thanks to Shannon Turczak, Camilla Tapp, Lindsay Jolivet, Ayat Mneina, Alex Peden and Mireille Bohémier.

There are many consultants and contractors who have also helped Evidence Network along the way, and who have been a pleasure to work with. Thanks goes to Gary Slywchuk of Troy Media; Eileen Affleck of Folio Designs; Jane Shulman; Lou Lamontagne and Margot Lacroix of Intersigne; and Michael Rae and associates at LexiCom.

On-going words of advice and guidance from a wide range of individuals and organizations have been greatly appreciated and perpetually useful: from John Cruickshank; Jeffrey Simpson; John Hinds; David McKie; Gerry Nott; Margo Goodhand; Nick Hirst; Gerald Flood; Christine Nunez; the Atkinson Foundation; Christine Pierroz; the Science Media Centre of Canada; Janine Harasymchuk; Jennifer Thornhill Verma and her colleagues at the Canadian Foundation for Healthcare Improvement; Michelle Driedger; Alan Katz; Ariel Bautista; Sophie Buternowsky and Robyn Tamblyn.

We are also thankful for the past participation of co-founder, Sharon Manson Singer, who helped launch EvidenceNetwork.ca.

And of course, crucial to our project was the funding of the Canadian Institutes of Health Research (2009-2017), Research Manitoba (2009-2017), the Manitoba Centre for Health Policy (2009-2017) and the George and Fay Yee Centre for Healthcare Innovation (2014-2017). We are thankful for your support and confidence in our project.

Together, this talented collection of journalists, academics, communicators, policy makers and funders have not only made Evidence Network possible, they’ve made it thrive. We are looking forward to many more years ahead.

Noralou Roos, Director, and Kathleen O’Grady, Managing Editor, EvidenceNetwork.ca

Why We Need More Canadian Health Policy in the Media

Introduction

Stepping beyond the ‘hallowed paywalls’ of academic publication

Why academics need to make sure their evidence matters

By Kathleen O’Grady and Noralou Roos

Why We Need More Canadian Health Policy in the Media is our fourth in a series of eBooks, bringing together opinion-based commentaries on pressing Canadian health policy issues from Evidence Network’s more than 80 Canadian and international academic experts. Why do we do this? To make sure the evidence matters.

An average paper in a peer-reviewed academic journal is read by no more than 10 people, according to Singapore-based academic, Asit Biswas, and Oxford-researcher, Julian Kirchherr, in their controversial commentary, "Prof, no one is reading you," which went viral last year. They cite some remarkable statistics – as many as 1.5 million peer-reviewed articles are published annually with as many as 82 percent never cited once, not even by other academics.

In other words, most academic writing rarely influences thinking beyond the privileged circles in which it is constructed – and the vast majority are far from influencing public policy and debate on critical issues.

Other academics question such dire statistics and use different approaches to shore up the numbers, such as changing what counts as a citation (including self-citations and non-academic citations), and using a longer window to check for citations. But their attempts to improve the portrait of academic influence are not much better.

A cheeky article on the topic in the Smithsonian, entitled, Academics write papers arguing over how many people read (and cite) their papers notes that a 2007 study claimed half of academic papers are read only by the author and the journal editors – a stab to the heart if there ever was one. They also cite (not without irony) a 1990 study which claims a whopping 90 percent of academic papers are never cited.

Dahlia Remler on the London School of Economic blog casts doubt on the damning figures in her article, Are 90 percent of academic papers really never cited? and notes that citation rates actually vary widely by field. Still she acknowledges that as many as one third of social sciences articles go uncited, 82 percent for the humanities and 27 percent for the natural sciences. What started out as a skeptical rejoinder ends with a simple plea: Academic publication needs fixing.

Lest the sciences think they come out looking good here by comparison, evidence from other quarters is not so favourable. Twenty years ago, the journal Science found a mere 45 percent of articles published in the top 4,500 science journals were cited within five years. A more recent study found a decline in that figure – only 40.6 percent of articles in the top science and social science journals were cited within five years.

In other words, the problem is not a new one and appears to be worsening. Why? There’s simply too much to read.

We Are Awash In A Sea Of Unread Journal Articles

There has been a dramatic growth in the number of journals, and by extension, journal articles, published every year. The STM Report from 2015 notes there are more than 28,000 active scholarly peer-reviewed English-language journals which publish around 2.5 million articles annually. The report notes the number of journals is growing at a rate of at least 3.5 percent per year; this reflects a growth in researchers of about three percent per year.

Growth in the number of academic journals is possibly also linked to their surprisingly high profitability – as well as the counter movement to create open-access journals. To put these growth numbers another way: the rate of journal article output more than doubles every 20 years, notes the Chronicle of Higher Education. And those are the optimistic numbers. Another study pegs journal article growth at an average 6.3 percent per year.

The result? A trend toward fewer citations per paper. It appears we are awash in studies no one ever reads.

It’s not bad news for everyone as it turns out – just for most. As the number of journal articles increases, the number of citations on average per article, decreases. The STM report, however, notes that the distribution of citations is highly uneven, with 80 percent of citations coming from fewer than 20 percent of articles. As one researcher summarized the trend: fewer journals and articles [are] cited, and more of the citations [are] to fewer journals and articles.

In other words, the deluge of uncited papers is punctuated by a handful that rise to the surface like the tip of an iceberg. But lest you get the impression the established journals are the ones benefitting here, the trend is just the reverse. The dominating influence of elite journals may be on the way out. Turns out highly cited papers published in highly cited journals are on the decline, while the number of highly cited papers coming from new and less established journals rises steadily.

There are any number of mitigating factors for why we have so many unread journal articles – the publish or perish mantra that seems to kick in earlier with each generation of scholar; the parsing of a study into many component parts to maximize journal article output; the inflation of referenced articles and co-authors to boost impact factors; an academic system that rewards researchers for output and not necessarily influence – to name a few. No change is imminent, unless, as one commentary notes, the system of rewards is changed.

But not least of all, part of the blame is surely the result of a system that looks down upon or at least disregards academic engagement with media, policy makers and the wider world it claims to address. The truth is, few beyond the academy know or read academic journals.

Incentivizing Academics to Engage With the Media

It would be a small – but critical – step for academics to tell audiences why their research matters. Presumably much of the research in journal articles would and should matter to those beyond academic circles – particularly those who are in the business of creating policy.

Biswas and Kirchherr in their Prof, no one is reading you, propose just such an approach. The answer to researchers being trapped in the echo chamber of academic journals, they suggest, is to step beyond them – and engage the mainstream media: If academics want to have an impact on policymakers and practitioners, they must consider popular media, which has been ignored by them. This is not a refutation of the journal publication, or the important evidence it imparts, but an extension of the publication process.

So why is this not happening already – at least not frequently?

An article in SciLogs put it this way: The biggest hurdle is that academia has yet to find an incentive for them to take time away from the lab to engage the public. Universities still operate under an ancient system that values only scholarly output.

Academic physician, Daniel Cabrera calls for a change in the way traditional journal citation "impact factors’ are used for academic promotion. He suggests instead we establish a system that also rewards academics who engage and share their knowledge with the public via traditional, new and social media too. Journals and citation counts are no longer enough.

Cabrera points to the many publicly available and robust metrics now available from media and social media and concludes: As Clinician Educators, we should champion the movement from a 50-year old journal-based index that imperfectly serves as a surrogate of influence to modern analytics with the ability to monitor, measure and share the real-time influence of scholars in their institutional spheres but also in their public spheres. The time has come, he suggests, for academics to engage beyond journal articles and communicate their evidence and ideas to a broader interested public.

By no means are these calls for academic engagement with the media – and beyond – isolated. It’s become somewhat of a clarion call.

Last year, the Guardian published a commentary entitled, "Academics: leave your ivory towers and pitch your work to the media. As an academic herself, but also a journalist, the author, Kristal Brent Zook says she’s wondered why her academic colleagues don’t engage or write for the media more often: Why don’t we hear more from the doctors behind the data?" So she asked around. The answers she got from a survey of academics surprised her.

It turns out the main reason is fear. According to Zook, academics don’t engage with the media because of fear of the unknown – both the media, and how it works, and of engaging with the general public. There’s also an unspoken wariness, at worst, hostility, between academics and journalists who have differing cultures, time lines and agendas.

However, according to Sense About Science USA, the journalist door is (almost) always open. They recently published new media guides for scientists and surveyed more than 200 journalists in the process. They found 92 percent of journalists are always open to scientists calling them if they have information; 94 percent of journalists said want to hear from sources if they feel they were misquoted or misrepresented; and 94 percent always or most of the time read the academic article(s) in question before contacting the scientist for interview about their research.

What Happens When Academics Step Outside the Echo Chamber of Academic Journals?

In her commentary, Zook notes the positive outcomes that arise when academics do engage the media. One academic said that a single of her posts went viral, ended up on numerous syllabuses, and opened up opportunities to write academic articles, book chapters and even a book, and indirectly, a grant. It was a catalyst, she said. Another highlighted how writing for the media made her a better writer. She realized how riddled her writing was with jargon and that these big words were often a ‘crutch’ – I have to cut through the bullshit and just say what I really mean.

In a recent British Medical Journal blog, David Payne echoes the call for broader public engagement: Being an academic is all about people knowing about your research…Don’t leave a paper to its own devices. Publication is not enough, in other words – it’s the beginning of a process of engagement, not the end of it.

Duncan Green, similarly, in the London School of Economics Impact blog says that much of academic life is spent within the hallowed paywalls of academic journals but that academics could and should engage more with new and social media to attract an audience to their research and give their research meaningful impact. He calls engagement with a wider audience an antidote to futility.

Like Payne and Zook, he cites specific instances where engagement clearly resulted in significantly increased journal article readership, among other real world and academic outcomes. So it’s not about abandoning traditional academic publishing, but expanding its scope and reach – and making their evidence matter. What academic wouldn’t want that?

A Wall Street Journal article headlined, Why the Dean of Harvard Medical School Tweets similarly outlines how successful engagement strategies – in this case, using Twitter – can make academic research meaningful beyond the academy, and reach other educators, policy makers, economists and politicos with important outcomes. Harnessing traditional and new media to engage with wider audiences helps make the research live on, in other contexts, and affect change.

How the Public Reaps the Rewards of Academic Engagement

So engaging the public through traditional and new media is good for academic up-take in a wide range of ways, but it turns out it’s also good for the general public too. According to Deepti Pradhan writing for the Op-Ed project, only two percent of citizens in the U.S. are actively and formally learning about science – the rest learn about science through the general media. Quality evidence in media outlets can help shape public perceptions and public debate on important policy issues. The lack of it can sometimes have devastating consequences.

Declining vaccination rates is a good example. In a study last year, 60 autism scientists were polled about the importance of communicating their work to the public. Fifty-nine felt their research would be of interest, yet less than half felt it was ‘very important’ for them to do this – in other words, they felt it wasn’t their job. Half felt they didn’t have opportunities to communicate with the public, and half felt they didn’t have the time to do so.

But the study authors emphasize the outcome of just such a lack of engagement. They note that the field of autism – including amongst the parents and caregivers of kids with autism – is riddled with misinformation. This has real world consequences, not least of which is the all too recurring myths around the harms of vaccination (that they cause autism – substantial evidence says they don’t) which directly affects rates of vaccination in the population.

The evidence is there, and it’s good, but it’s not getting to the public. The lack of communication between scientific researchers and the public threatens the relationship with the community they’re trying to help, claims an editorial from the Simons Foundation Autism Research Initiative.

Other calls for academic engagement with the world beyond journal publication include Ben Goldacre in the Times Higher Educationwho says we need more academic engagement in the public policy process specifically: we need more of this interaction, not less. He writes articles in the mainstream media regularly and meets with policy wonks and politicos in an effort to get research out of journals, informing policy-making and legislation-building in the process. According to Goldacre, Policy staff are crying out to be lobbied by knowledgeable academics. They want and need the evidence to do their work and academics want their work to matter. It’s a perfect marriage of sorts. As one policy maker said to him, If none of the [academics] are ever calling me, then what do they do all day that they all think is more useful? A damning indictment.

The refrain of having academics dive into the policy debates and discussions that have real life consequences come from many quarters and from around the world. It is motivated – on the whole – not from a critique of the scholarship but from a desire to see quality evidence affect change, for our public investment in higher learning to bear fruit in public policy and beyond. But there are real barriers that can’t be ignored. The challenge for many academics is that even if they want to engage in such public discussions – to go where the audiences already are, in traditional, new and social media – they don’t often know how to go about it and few have the time or the resources to do it properly.

About EvidenceNetwork.ca: How 700 Words Can Make a Difference

It was in just such a context that EvidenceNetwork.ca was born in Canada. Founders, academics Noralou Roos and Sharon Manson Singer were frustrated that research they knew well in the field of Canadian health policy seemed to rarely make it into the mainstream media. There were a few notable exceptions – produced by the handful of remaining well-trained health journalists scattered across the country. On the whole, they found the media discussion dominated by hyperbolic language from left- and right-wing think tanks and political parties. The extremes got air time, but most of the nuance and depth of any research was lost.

Roos and Manson Singer wanted to inject more evidence into the discussions and to see the rich world of academic research given equal air time. So they created EvidenceNetwork.ca – with a sizeable grant from the Canadian Institutes of Health Research and Research Manitoba, to create a bridge between the world of academia and the world of journalism.

What started out as an experiment in 2011 has blossomed into a full media service for academics and a clearinghouse of high quality, original health policy articles ready for publication for media outlets.

At first, EvidenceNetwork.ca simply offered, on a static website, the names and contact details of academics in the field of health policy who were willing and able to be interviewed by the media in balanced, non-partisan terms without vested interests. This was only modestly successful.

Next, EvidenceNetwork.ca decided to more directly get academics engaged with the media. So we created a Media Advisory Committee to give us advice. In consultation with our academic experts, we discovered academics often worry they’d lose control of the message and the way their research is represented in the media in traditional interview formats. At the same time, we learned from our media advisors, how academics often failed to heed the tone, style of language and breadth of discussion permitted in submissions to media publications.

From this tension was born the idea to help our academic partners craft op-eds – the opinion-based commentaries that appear in most media outlets. Op-eds frequently influence politicos, policy makers and other decision-makers, and are a popularly read media genre where studies and evidence come to the fore. We knew that many Universities already offer media training to academics – one-day or one-hour ‘how-to’ courses on how to write and pitch op-eds – so we wanted to offer something more robust.

We adopted a slightly different model with the idea that academics can’t be all things to all people. They can’t be expected to know inside-out the media environment or have the time or interest to develop relationships directly with journalists and editors. So we decided to do that for them.

EvidenceNetwork.ca acts as a mediator and editorial service for academics who are asked to first write a rough draft of their op-ed. We guide them on how to proceed with the first draft – the dos and don’ts of the process (See Appendix A – How to write an op-ed). After that, we take it from there. Our editorial team works on tightening up the op-ed with the needs of specific media outlets in mind. Rough drafts are often trimmed to specific word counts, the argument is tightened and jargon-laced language is excised in place of plain or conversational language suiting traditional op-ed style.

The author is part of this process throughout. The op-ed routinely goes through three or more rounds of edits and – if the material is controversial or political in any way – it goes through an informal peer review process with other experts vetting the piece for balance and accuracy. All points of evidence are hyperlinked to their sources. Once we are certain the piece is ready for the media, we secure author approval, and then EvidenceNetwork.ca shops the op-ed to the major media outlets on behalf of the author.

The result is that the author maintains control of the message and the language of the article, while at the same time benefitting from the expertise of EvidenceNetwork.ca staff who liaise regularly with media editors to learn what styles and formats they prefer and require, and to establish trust and rapport.

The media love to receive the free, quality content written to their specifications and from a wide range of academic experts across the country. The academic experts are not expected to know the media landscape so are walked through the process – and the media placement is managed for them. The cost of the operation is minimal and the turnaround time for an op-ed is rapid – in keeping with media time constraints. Everyone ends up happy. In the parlance of the 1990s, it’s a win-win-win.

We have the data to prove it. Op-eds produced in participation with EvidenceNetwork.ca have been a resounding success. In the last year alone, we edited and placed over 100 op-eds. Almost four dozen were published in the top five media outlets alone (Globe and Mail, National Post, Toronto Star, La Presse and Le Devoir) in a single year, and 191 more were published in the bigger city media outlets and 665 in the smaller regional media in 2015. Year over year we’ve improved these metrics (See Appendix B and C). In total, we’ve published 494 op-eds garnering more than 2000 media hits in fewer than five years, publishing in the biggest media outlets to the smallest niche and rural papers.

Like the commentators who plead for more academic engagement with the media and who tout the real world benefits of the exercise, our little Canadian experiment has proven that a measly 700 words (the average size of an op-ed) matters. Our op-ed writers, as a result of their op-eds, have been cited by Ministers, invited to Parliamentary hearings, committees and briefings – at the federal and provincial levels. Our op-eds have kicked off other media investigations, editorials and interviews for our writers – in print, online, radio and TV – and several of our op-ed writers have won academic engagement awards from their universities for their efforts. How much of the research documented in the op-eds has been picked up and used in political, policy and other circles is harder to measure – but we know at the very least the research is getting out there and not just sitting in academic journals. Op-eds don’t require much time investment, they are high profile and often shared widely on social media. They become part of the public discussion and dialogue around important issues of the day. 700 words, it turns out, can make a difference.

About this Book

This e-book is the fourth in a series of collections of our published op-eds. This volume represents op-eds from 2015, so it is a snapshot or repository of the health policy debates of the year – and what a year it was, with a fraught and heated federal election campaign. The op-eds here often address the political landscape (what the political leaders should be addressing in their campaigns), and then after the election, what the priorities should be for the incoming party. While the federal leadership has changed, many of the issues still remain, and the research, timely.

The book is arranged in several chapters starting with the always popular Aging Population – including discussions on pensions, homecare, long-term care and assisted dying. Next is Health Care Costs and Spending, which includes everything from what should be included in our publicly covered health system to debates around privatization, wait times and patient-centred care. Health is More than Health Care encompasses all the social factors that influence health status, such as affordable housing, climate change, poverty and early childhood education, among other factors. Pharmaceutical Policy addresses the idea of pharmacare and if and how it should be implemented, wades into the vaccination debates, and details the effects of pharmaceutical influence on doctors and patients. Finally, we also include a small section Comparing Canadian and American Health Systems since there are many lessons to be learned from one system to another and back again.

We hope with the creation of this e-book that we continue to be part of the movement – clearly a global movement now – that pushes academic evidence out into the world in an accessible format so that it does not sit idle behind journal paywalls but makes a difference in the world in which we live. We also hope that the bridge we’ve helped build between mainstream media and academic research sets a precedent for further exchanges and participation between these two distinct groups. We also hope that our op-ed model will be copied and replicated by others elsewhere.

We all benefit when research is read widely and discussed soundly. It’s how we can make sure evidence matters.

Chapter 1: Aging Population

Why Canada needs a national plan to address dementia and Alzheimer’s

By Howard Feldman and Carole Estabrooks

One of the biggest threats to quality of life and health in aging is the loss of cognitive abilities and functional autonomy that are associated with dementia, including Alzheimer’s disease. The projections of the number of Canadians living with dementia are staggering with over 750,000 individuals affected today, an attendant doubling by 2030 – and with health care costs of $293B by 2040.

In September 2015, the Canadian Academy of Health Sciences (CAHS) held a Forum on dementia in Canada. This brought together social scientists, biomedical and health services researchers, health care practitioners and technology experts to review current knowledge about prevention and care of dementia with the goal of advancing solutions.

The overarching message of the Forum was that while we have seen many successful pilot projects across the country, there is no mechanism to ensure that these best practices and evidence are scaled up so that all communities in Canada benefit.

So what should be done? Canada needs a national action plan to address dementia and Alzheimer’s. And we need one soon. Here’s why.

Drugs are not presently the answer, and imminent pharmaceutical solutions seem unlikely with more than 200 drug development failures in the last 30 years.

Prevention is promising but challenging. The recently reported FINGER study shows that dietary counselling, exercise training, blood pressure control and cognitive training achieved significant benefits in cognition and well-being. Unfortunately, there is no clear way to scale-up these important findings for the population as a whole.

Then there’s quality of life, mobilization and sustaining a safe environment which are also critical for people already living with dementia in their homes and community settings. There are promising solutions, ranging from age friendly community design to technology – much that Canada could learn from.

Dementia-friendly communities and optimizing built environments are being explored internationally to enhance accessibility, way-finding and engagement in community life. Those affected with dementia may also stay in their homes longer, through smart technologies that prompt tasks and collect data that can be relayed to family and health care providers. Robotics, too, may support an individual’s cognitive strength while futuristic self-driving cars come ever closer to implementation.

In other words, there’s no magic bullet. What we need is a multi-faceted approach that requires real leadership and adequate resourcing for implementation.

There are some key challenges across the country that need addressing for starters. Accessibility to assessment, diagnosis, treatment and comprehensive continuity of care is a major challenge in all jurisdictions across the country. Quebec offers a promising model with the family doctor at the center of an interdisciplinary team, coordinating care and supporting affected individuals and their families through their disease course.

Home care needs national attention too. The type of home support available across Canada varies widely, with limited provision being the common feature. The truth is family and friends of persons with dementia provide most of the care and the health care system tends to be reactive rather than guiding or integrating care.

We can address this with a national focus. There are noteworthy programs that have been developed within provincial boundaries but which have not yet spread to other jurisdictions.

In Saskatchewan, for example, researchers and clinicians have created a one stop shop dementia intervention clinic using telehealth, allowing more care to be provided in the home community, making it easier for those living in rural areas – a major challenge in Canada.

A national plan also needs to address the later stages of living with dementia. Right now we are highly dependent on residential care settings where there are significant challenges across the country in providing consistent quality of care, quality of life and quality end of life care.

We can no longer hope for simple solutions or a miracle drug to cure our dementia problem in this country (if we ever could). And the status quo simply won’t hold. What we need is a strategic action plan for the country that facilitates prevention strategies, advances systems of care delivery, re-shapes our living and built environments and mobilizes technology so that all Canadians with dementia – regardless of who they are or where they live – are supported in their communities as long as possible, and when that is no longer possible, receive exemplary quality care.

We’ve known about the rising rates of dementia – and the catastrophic costs to the health care system – for years. What we need now is a multi-faceted action plan with government, the private sector, and the community at large coming together.

Howard Feldman is an advisor with EvidenceNetwork.ca and Professor of Neurology, Faculty of Medicine, University of British Columbia.

Carole Estabrooks is Professor & Canada Research Chair, Faculty of Nursing, and University of Alberta.

Le Canada a besoin d’un plan d’action national sur la démence et la maladie d’Alzheimer

Par Howard Feldman et Carole Estabrooks

La détérioration des habiletés cognitives et de l’autonomie fonctionnelle associée à la démence, notamment à la maladie d’Alzheimer, constituent l’une des plus grandes menaces pour la santé et la qualité de vie au cours du vieillissement. Les projections sur le nombre de Canadiens atteints de démence donnent le vertige : plus de 750 000 personnes en souffrent aujourd’hui et leur nombre devrait doubler d’ici 2030; d’ici 2040, le coût des soins atteindra les 293 milliards de dollars.

En septembre dernier, l’Académie canadienne des sciences de la santé (ACSS) tenait un forum sur la démence au Canada qui a réuni des chercheurs en sciences sociales, des scientifiques spécialisés dans le domaine biomédical et les services de santé, des professionnels de la santé ainsi que des experts en technologie. On y a fait le point sur les connaissances actuelles en matière de prévention et de traitement de la démence dans le but de proposer des solutions.

Le principal message qui ressort de la rencontre est le suivant : malgré le succès des nombreux projets pilotes menés d’un bout à l’autre du pays, il n’existe aucun mécanisme qui permettrait d’étendre les pratiques exemplaires et les données probantes qui en découlent pour que l’ensemble de la population en profite.

Que faire devant ce constat? Il faut adopter un plan d’action national sur la démence et l’Alzheimer. Nous en aurons besoin bientôt. Voici pourquoi.

Tout d’abord, les médicaments ne sont pas la solution pour l’instant; ils ne risquent pas de le devenir dans un avenir très rapproché, vu les multiples échecs de la recherche pharmaceutique depuis une trentaine d’années, qui se dénombrent à plus de 200.

Ensuite, la prévention est une avenue prometteuse, mais exigeante. L’étude FINGER, publiée récemment, a montré que le counseling diététique, l’exercice, le contrôle de la pression artérielle et l’entraînement cognitif amélioraient sensiblement les fonctions cognitives et le bien-être. Malheureusement, il n’y a pas de moyen évident de faire profiter l’ensemble de la population de ces importantes découvertes.

Par ailleurs, la qualité de vie, la mobilisation et la sécurité de l’environnement sont des considérations essentielles pour les personnes atteintes de démence qui vivent encore chez elles et dans leur milieu de vie. Il existe des solutions intéressantes, dont les aménagements adaptés aux personnes âgées et les aides techniques font partie. Ce sont des aspects au sujet desquels nous pourrions en apprendre beaucoup.

Ailleurs dans le monde, on explore des moyens d’aménager des milieux de vie et des cadres bâtis adaptés à la démence, dans un souci d’améliorer l’accessibilité, la capacité de s’orienter et la participation à la vie sociale. Les personnes souffrant de démence peuvent ainsi vivre chez elles plus longtemps, grâce à des technologies « intelligentes » qui accomplissent des tâches et recueillent des données pouvant être transmises aux proches et aux prestataires de soins. La robotique peut servir à soutenir la capacité cognitive; les voitures futuristes sans conducteur, par exemple, semblent une réalité à portée de main.

En d’autres mots, il n’y aura pas de solution miracle. Il faudra recourir à une approche multidimensionnelle, appuyée par un véritable leadership et des ressources adéquates pour sa mise en œuvre.

Nous devrons d’abord nous attaquer à certains problèmes fondamentaux. Dans l’ensemble des provinces et territoires, l’accès en matière d’évaluation, de diagnostic, de traitement et de continuité des soins constitue un enjeu majeur. Le Québec a mis en place un modèle susceptible de nous inspirer : le médecin de famille assume le rôle de pivot central au sein d’une équipe multidisciplinaire; il ou elle coordonne les soins et appuie les personnes touchées et leurs proches tout au long de l’évolution de la maladie.

La question des soins à domicile exige également une action à l’échelle nationale. Les structures de soutien varient grandement d’une province à l’autre; elles ont en commun d’être limitées. En réalité, les soins que reçoivent les personnes atteintes de démence sont prodigués en grande partie par leurs proches et leurs amis. Le système de santé tend à réagir aux besoins en matière de soins plutôt que de guider ou d’intégrer leur prestation.

Nous pouvons nous attaquer à ce problème par une action coordonnée à l’échelle nationale. Des programmes