Something wonky happened on the way to government policy and sadly many aspects of how we make decisions and what we consider as evidence in decision making in health care has lost its connection to the value of life and the human experience, elements that are hard to capture and contain as evidence.

With good intentions, patients (some call them public members, others call them non-experts) are now being included in various components of health care technology assessments. In September 2007, I was appointed as the patient member to the Ontario Ministry of Health’s Committee to Evaluate Drugs.

It has been an amazing experience and my life is so much richer from the knowledge and experience that others have shared with me. It has also been somewhat disheartening. I will give you the good news first.

Patient inclusion has opened the door for new dialogue on how to capture how a condition impacts the quality of life, the sense of worth and the ability of one to reach their potential. Decision makers are discussing how to capture evidence that is qualitative in nature and incorporate it in a meaningful way so that it becomes quantitative and is considered as criterion for funding recommendations. It is what we, the patients, asked for as we move towards the next step; a patient centred health care system.

Having a voice at the table means that decisions are not dictated exclusively by science and economics and that the softer sciences have value and that it is OK to be emotive. It led to the Patient Evidence Submission Process in Ontario in May of 2010 that created a mechanism for patient groups to express their lived experiences of living with the burden of a disease and what expectations were for new drug therapy and how it would improve the quality of their life and what risks they were prepared to take. It was good intentions captured in policy.

It is important to have the patient voice at the table, but it is challenging for that patient or two to represent the perspectives of all patients. If you don’t mind me sharing, I am been living with HIV for 23 years, diagnosed at a time when it was a death sentence. I however have benefited from the courage and vision and the willingness to take risks of activists and advocates who changed the concept of health care drastically by demanding that a patient be at the table, by setting standards for ethics in research and equity in access and in developing community care. I was subsequently diagnosed with Hepatitis C in 2006 and then again benefited from access to treatment, albeit a difficult one for me to manage in terms of physical and psychological effects as treatment cleared the virus from my body. I am living a sweet life. I am living my life to my potential and it is true what they say, what doesn’t kill you makes you stronger and for me, most importantly it taught me the power of empathy.

Now the not so good news, not all the patient voices are represented equitably. I can’t speak to diseases that have not impacted me in any way. I have my own biases, my own values that may not reflect the true experience of a condition. I have been subject to stigma but I am aware that I can also apply it to therapeutic areas that I am poorly informed about.

Patient representatives on committees need to be supported with the skills and knowledge to reach out to patients, to hear and then pass along the narrative and bring it to the table. Ultimately those patients themselves should be in the room during the deliberation so they can participate. The composition of decision making committees should also be enhanced to include other experts such as bioethicists and nurses so that the experience and impact of one’s diagnosis and managing it is captured holistically and equitably.

Government agencies should empower patients to become leaders by investing in us as they do in any human resources. That would be meaningful. It would be respectful.

We need to be compensated for our time and effort at a rate that is equal to other experts. Patient members could be given the opportunity to earn an income so they can live in dignity, have the resources and be able to access the tools to manage their health and continue to engage rather than succumb to inertia.

It’s not just a matter of having a patient at the table, it’s a matter of having the right patient at the right table. This means consulting with patient groups when recruiting to identify leaders that represent the patient community and for government to allow them to perform outreach to patient groups, to individual patients, caregivers and family and experts who treat a condition so that they can fully bring the voice of that patient with that disease who wants access to that treatment. Investing in patients provides an excellent return on investment.

I am sure you have also heard the word silo a lot lately. Well that’s what makes patients so great, we are not silos, we move from one government sector to another as we transition through life. By managing a diagnosis we are living examples of integrated health care and chronic disease self-management. We are creative thinkers and learn how to manage scarce resources. We are not afraid to take risks because for many of us, taking risks is how we learned to survive. We have powerful stories and it is those stories, the power of the narrative that needs to be integrated back into health care, so that we can make decisions that are fair. Patients move faster than the speed of bureaucracy.

Canadians consistently rank health care as the most important issue but the majority have no idea what health care actually is other than something that is uniquely Canadian and is there when they need it and when it’s not needed, tax cuts are preferred. I was one of those people, I had no idea that there was a Committee that made decisions as to which drug therapies would be listed on the formulary for access on the public drug program. I didn’t even know what the word formulary meant.

A patient member could be a full time job contract where are responsibilities could expand to lead the much needed debate that must happen on educating the public on what health care is, why it costs so much in Canada, and also to begin the dialogue on quality of life, living wills, euthanasia and other issues related to end of life. We need to go there.

We need to define what is conflicted. We need to reconsider what is evidence. We need to create balance sheets for drug therapies that cover the costs and benefits of treatment at the pan-Ministry level.

We also do need to be patient and collaborative and respectful of each other. Research in the area of social sciences can stimulate new strategies for a better decision making process (when you have a moment to yourself, google Multi Criteria Decision Analysis and tell me what you think). We need better knowledge exchange forums where cost and geography are not barriers so that more ideas are shared, this will lead to better policy and better best practices.

Patients need to step up to the plate too. We should make it a priority to understand our conditions and how to best manage them, to explore better living in a curious and hopeful way, and not in a shameful way.

Yes, we need a lot of things, but most of them are small steps. Incremental improvements!

It’s time for Health Care Technology Assessment Version 2.0 and to move from good intentions to the next step to better and more efficient healthcare. Perhaps the first line of treatment might be that we make health care political and hold politicians accountable to waste, to innovative ways of partnering and creating solutions. The private sector does that very well, government has no excuse not to operate by the same set of standards of excellence in performance.

Let’s demand from the political parties what their platform is on sustainable health care and how they will allocate scarce resources so the public can select the leaders that represent their values towards health care. I think our goal as a society is no longer about survival of the fittest, it’s about recognizing the fact that some individuals are dealt a difficult card which makes life challenging and sometimes scary. It could happen to any of us and I don’t want anyone’s life to be scary. By valuing the challenge of disease and the will to survive and fostering strategic thinking from the individual and including it in all components of in decision making, we take care of each other and then I think we will all feel better.

A quick story. After working out one day, I felt that I pulled a muscle. So when I had a physical not long after, I told my family doctor. She said it was probably nothing, that the pain would go away by itself. I listened. When the pain continued for a few months, my doctor still said not to worry. Finally, after more prodding on my part, I received a requisition for an x-ray and have since been diagnosed with arthritis.

Why did it take so long? Mainly because I felt uncomfortable pushing back.

That’s a common feeling. People tend to trust their health care provider, and the health care system. That confidence is often well-placed. But it doesn’t show a lack of faith to want to ask questions, be involved in your care, and have a voice in how our health care is delivered. It shows that you’re a smart consumer.

In our own business, market research tells us that patients want to be engaged that way. The health care system knows that too. Many health care organizations and practitioners are talking about a “patient-centred” model. But patients need to put themselves at the centre of discussions and decisions.

That’s happening more and more, and at all levels. The most obvious is one-on-one at the clinical level, where many patients are feeling more empowered. It’s equally important to gain the patient perspective at the health system level, when institutions are planning services, or when governments are forming health care policy.

For example, we see the emergence of numerous patient advocacy and rights groups. Patients are also being represented on various boards and panels of health care bodies.

Another important sign is the opportunity that patients have to weigh in on entities like the Common Drug Review. That’s essential. Scientists and studies may be able to tell us about the effectiveness of drugs. But patients alone can speak to quality of life and the real world impact. How does it feel? Only patients have that answer.

That’s because patients are ultimately the consumers, in this case health care consumers.

What’s interesting is that in so many other consumer areas, people are highly engaged. Take for instance the electronics store, before going in and making a decision about what product to buy, you’ve probably poured over reams of information on the best models, and have the knowledge and willingness – the eagerness – to ask thoughtful questions. In fact, I’ve seen studies that say that people spend more time researching electronic gadgets than they do their doctor.

In the commercial world, companies not only anticipate consumer input, they readily seek it. They become more responsive as a result. That needs to happen much more in health care too. Patients should always feel comfortable and entitled to make their voice heard loud and clear, around the care, service and choices they want.

Patient expectations of the health care system and their participation in it are growing, and that’s positive. You can call that a patient revolution. But I like to think of it as being about knowledgeable and involved consumers – and that always leads to better outcomes.

Sabrina Paiva is Senior Manager, Product PR and Stakeholder Relations for Amgen Canada (www.amgen.ca).

The perfect storm of an ageing, demanding baby boom population combined with the increased incidence of multiple chronic conditions, expensive technologies and new drugs is converging to effectively capsize an already challenged system. It is a global problem. And one Canada must urgently tackle.

Projections are that by 2030 health care spending will consume 80% of provincial budgets.
Chronic disease represents some 80% of healthcare system interactions and more than 70%
of healthcare expenditures. Of those aged 65+, 80% report suffering one or more chronic
conditions.

Baby boomers have been the drivers of everything from pablum to disposable diapers. Soon, over 24% of our population will by 65+ and once again this cohort will be a driver of change. This time to a people-centred, participatory, e-patient model of care.

Consider this: Canada spends more than most developed countries on healthcare but the 2010 Commonwealth Fund International Health Policy Survey concluded that Canada has the least effective, least safe, least co-ordinated, least timely and least patient-centred care amongst the nations surveyed.

The same report noted that 80.3% of Canadians use Internet regularly and 40.7% of Canadians aged 65+ engage in online activity. IPSOS Reid predicts consumer trends will see massive increases in Internet usage (Statistics Canada 2010).

According to the Ivy Centre for Health Innovation and Leadership, “Although Canada ranks
amongst the top 4 OECD nations in knowledge creation, it ranks dead last among OECD
countries in the transfer of new knowledge to innovative health care technologies and solutions”.

As a former CEO in the financial services sector, I know that consumers embrace the
convenience, speed and accessibility of their banking records and funds – wherever in the world they may find themselves. Imagine life without a bankcard that can be swiped to allow fund transfers and payments, or instant cash in local currency when travelling abroad? Stock research and trades from an iphone, bill payments online, mobile flight check-ins to avoid airport line ups, instant messaging to stay connected with loved ones, cloud computing that allows instant syncing of calendars and sharing of information, face-time and social networking for support and emotional connection. These technologies have become de rigueur and have helped to make our lives easier, while keeping us engaged and feeling connected. We are more empowered. Knowledge is at our fingertips.

In everything that is, except healthcare.

The fact is, our 20th century medical worldview did not conceive of 21st century technological realities.

We must now embrace the information technologies that other sectors of the economy have
successfully implemented in order to enhance, at the core, the very patient engagement that will be vital in transforming the system to truly participatory medicine and which in turn will create efficiencies both in delivery and costs while improving quality and outcomes.

People-centred, participatory medicine is a critical paradigm shift that will be instrumental in addressing a system severely strained by the impending demographic and epidemiological convergence of ageing population and multiple chronic conditions.

It’s been said that publicly funded health care is one of the few industries that can ignore – even fail – its customer without risking the collapse of the business. Successful business leaders know their very survival is based on putting customers first. In order to sustain a universal health care system, we must now take the same approach by putting patients first and engaging them to become both active participants and self-managers of their chronic conditions.

A mandated system-wide patient-focused model will effectively inspire innovation, demand
accountability, promote adoption of technology and foster collaboration while improving quality care, outcomes and cost reduction; permitting the shift to a more health-first based system of prevention, wellness, and self-management of chronicity by designing everything around the needs of the patient and providing the tools that support participation.

There is a growing body of research that demonstrates that participatory medicine reduces
hospital admissions, shortens length of stay, reduces primary care visits, improves safety,
promotes self-care and facilitates teamwork.

We must adopt innovation and health technologies along the continuum of care in order to
engage people, create meaningful customer experience, improve quality and outcomes and
create sustainable effective delivery of health care, as well as management of health and
wellness. We must truly empower patients and their families to become active partners in the health care journey rather than helpless observers.

We must design and implement innovative ways to interconnect providers, patients and
services while providing the tools and technologies (i.e. Bluetooth-enabled monitoring) currently held in the exclusive domain of our provider-centred system – only accessible in institutional environments – in order to change the paradigm from dependence to independence.

Imagine a connected platform, powered by technology, that effectively enables data to be
shared in meaningful ways across the spectrum of one’s care and that includes remote heath monitoring, surveillance, electronic health records, coaching and navigation; coordinating and engaging the health ecosystem for the benefit – both physical and psychological – of the patient.

Participatory medicine is a major shift from the prevailing paternalistic attitude that ‘father
knows best’. Adoption requires both engagement and empowerment of health consumers and willingness by providers to embrace active patient involvement for joint decision-making and shared responsibility.

Physicians’ self-view has historically been the all-knowing guardian of information, placing
them safely on a pedestal. This phenomenon is not unlike the clerics of the Dark Ages
who recognized knowledge is power and went to great lengths to reduce the threat to their
powerbase by followers who wanted direct access to this information.

Forward thinking physicians today recognize that the world’s medical literature is already
available to their patients and some find relief in no longer having to appear to know it all – as this is just no longer possible. The amount of medical information doubles every 3 to 5 years (Dr. Daniel Sands, Beth Israel Deaconess Medical Centre). Some physicians are now – perhaps grudgingly – accepting the new paradigm while others openly welcome the active engagement and participation of their patients and the joint decision-making it enables.

My experience in the work I do, is that patients and their health care providers, families and
caregivers often do not have access to a complete record or all the relevant information
necessary to make decisions in line with desired outcomes. This compromises quality, puts
lives at risk, and prevents the engaged and shared decision making that are the cornerstone of a sustainable model.

The most effective way to improve health care is to make it more collaborative. It is our greatest hope for restoring the lustre of our national pride – our universal health care
system. Moving toward a ‘health’ system supported by participatory medicine and less of an acute health ‘care’ system will make our public system more sustainable and ensure its viability for generations to come.

Fundamental changes in society and economy have happened during periods of upheaval
that caused people to think and behave differently. I believe we are in just such a period of
emerging upheaval; it may be the impetus we need. A demanding, technology-savvy baby
boomer cohort reaching old-age in historic numbers and suffering multiple chronic conditions will combine, not least of all, with the advent and adoption by patients of Web 2.0 and mobile technologies to form the basis for collaborative participatory medicine. This electronic collection and dissemination of information has the ability for mass collaboration – transcending silos, old paradigms and geographic borders and allowing for partnerships.

If we don’t take action, if we don’t urgently move to participatory medicine we risk turning our national dream of world-leading, universally accessible health care into a nightmare of even longer wait times, scarcer resources, crammed, crumbling hospitals and vulnerable to the inevitable human tsunami that threatens our cherished system.

We will end up with a system no one wants. One that is unworthy of this great country.

Today, we continue to face challenges. Our population is progressively aging and chronically ailing. There are large care gaps, discrepancies between what usual care is, and what best access, diagnosis, treatment, and compliance should be, particularly for older, female and socially disadvantaged patients. In addition, there are caring gaps. A recent example involved a woman who was injured while visiting an acute-care hospital. She was refused rapid, direct assessment and treatment by hospital staff. Instead she was told to call an ambulance.

Randomized clinical trials are not required to relate such gaps in caring to patients’ perceptions of low quality of life.

Increasing awareness of care and caring gaps, in the face of increasing costs, is causing tax-paying citizens and tax-allocating decision makers to ask what, exactly, are we buying with our health care dollars. They wonder if things can be better.

Definitions of better vary, depending on the vested interests of varied stakeholders. However, several common, or cross-over, success factors have been proposed by academic, administrative, clinical and patient stakeholders. They include: a culture of shared goals, values and plans; community-based care teams, educated and engaged in the principles and best practices of teams, patient-self management and measurement-driven disease management; practical electronic information systems; and, leadership.

Repeated research and symposia have reaffirmed these priorities and recommended
multi-disciplinary, community-integrated disease management networks, supported by
communication of measures of care and outcomes, patient self-management and inter-
professional and non-professional education, is a preferred model for improving our population’s health. Research has also demonstrated such health social networks are cost effective and have a positive impact on provincial economies.

The key practical question, then, is: Will integrated health and management networks be widely implemented in the near future?

One approach that may offer some insight in answering this question, is to apply a variation of game theory, in which a group of very knowledgeable people identify key stakeholders who will exert influence on the decision to, or not to, propagate integrated disease management and, rate their likely position on four key questions: What preference does each influencing stakeholder have? What is the level of commitment to, or how hard will each stakeholder work for, their preference? How much clout do they have in the decision process? And, how resolved are they in their preference; or conversely, how easily will they change their preference?

My initial experience using this approach to predict the likelihood of expanding disease
management across one province suggests the results can provide a map of likely decision
making in the short term, as well as a guide to influence decisions in the longer term. In
this case study the knowledgeable panel was composed primarily of individual community
physicians and nurse practitioners, with representatives of academia, institutional medicine, industry and patients. The decision-influencing stakeholders rated were: the provincial government; regional health authorities; hospitals; community clinics; non-government health organizations (e.g., Heart Foundation); MDs, other care professionals; non-professional care givers; private industry; and, patients.

The results revealed all stakeholders’ preferences were either positive, or strongly positive, in favour of wide adoption of integrated disease management. In terms of commitment, the panel predicted that all stakeholders, except government, would work hard for their preferences. In terms of power to make the decision, most stakeholders’ scores hovered around neutral, with only government rated as strong. Non-professional care givers, patients and non-governmental organizations were rated as strongly resolved to stick with their preference over time; regional authorities, government and MDs were felt to be the easiest to move off their initial preference.

Thus, the broad weight of stakeholder support favoured expanding disease management
initiatives. Patients, care givers and non-governmental organizations have great resolve, but little clout, in the initial decision processes. Government has the most clout, but is the least committed to working for, and are more likely to shift from, their initial decision. One implication of these results is that, possible coalitions of stakeholders with similar preferences, commitment and resolve, may be able work together to re-shape decisions with time.

In summary, patient care and outcomes can be better. We have promising medical and political road maps for how to make them better.

Leadership is needed to facilitate clinically and economically beneficial health decisions and
ensure we do what, otherwise, we might not do.

On a regular basis, I am besieged by requests from patients to gain access to diagnosis,
specialists, treatment, test results, psychosocial care, or caregiver support. In many of these cases, patients feel they have no voice to make the request on their own. On behalf of patient groups or alliances, we are advocating on many fronts for patient partnership, for example, a policy to support rare and neglected disorders, comprehensive programs to engage and support patients in chronic condition self-management, aggressive health promotion and prevention initiatives that support patients to eat healthily and to be physically active. We know that these programs work best when patients partner in design, execution, and feedback, but how routinely are patients engaged?

So, when I was asked to write an opinion on the “patient revolution”, it seemed a good
opportunity to step back and take stock of the status of the patient movement in Canada and worldwide.

Is there evidence of a patient revolution? In the UK, the Department of Health has positioned the “patient revolution” as the cornerstone for “liberating the National Health Services.” They have even co-opted the slogan, “no decision about me without me”, a somewhat less prosaic but more pragmatic version of the original patient mantra, “nothing about us without us.” The World Health Organization and the UN High Level Summit on Health have called for patient empowerment and self-management as essential to dealing effectively and cost-effectively with noncommunicable (chronic) diseases.

In Canada, patient engagement and patient-centred care are currently popular concepts,
embedded in legislation (Alberta Health & Wellness Legislative Framework for Health, Canadian Agency for Drugs and Technologies in Health), health agencies (BC Patients as Partners, Quebec Institut national d’excellence en santé et en services sociaux), charters (Canadian Medical Association), vision (Health Council of Canada), and engagement initiatives (Health Canada Office of Consumer and Public Involvement). Recognition is important but in many of these cases, patients do not have any feeling of “ownership” or “partnership”, although they may have been consulted in the planning. To be fair, many of these are just getting starting and the BC Patients as Partners program stands out as an example where concerted efforts are being made to engage patients on many levels.

What are the indicators of a patient revolution? Some have proposed “participatory medicine” and the informed “e-Patient” as hallmarks of a patient revolution, both terms referring to patients who are informed and empowered to collaborate on making decisions and managing their own care, individually or as part of a patient community As CEO of the Institute for Optimizing Health Outcomes, I would certainly endorse the activated and engaged patient as a desired outcome. Our institute, along with organizations such as the Arthritis Society, Canadian Cancer Society, and the Kidney Foundation of Canada have supported patients to deliver the Chronic Disease Self-Management Program. In addition, the IOHO has trained healthcare professionals in Health Coaching to engage and support patient self-management. But these efforts are far from standard care, not well known or supported by healthcare professionals and not integrated into health service delivery in primary care, diabetes and other chronic disease clinics, and community-based care.

As importantly, from my perspective as Chair of the International Alliance of Patients
Organizations, Chair of the Consumer Advocare Network, and President of the Canadian
Organization for Rare Disorders, evidence of a patient revolution is the fact that patients and patient organizations are “doing it themselves.” No longer waiting to be invited to the table, we are developing and implementing patient-centred programs, hosting multi-stakeholder conferences, forums, and roundtables and inviting healthcare professionals, researchers, and decision makers to partner with US. Patient groups are setting up information and support networks as well as patient registries, collecting data and evidence (including patient stories) on impact and value of patient-centred care and proposing policies and legislation that support patient self-care, patient choice and patient rights to access information and care. Patient networks have progressed from funding advocacy training to training in drug review processes (regulatory review, health technology assessment, and patient submissions) and hosting policy sessions on topics such as genetic non-discrimination, subsequent entry biologics, and patient safety.

In the early days of strident patient advocacy (spearheaded by groups representing HIV/AIDS, breast cancer, and those infected through “tainted blood”), we demonstrated in the streets to call attention to the cause. But, it was clear that our real goal was to “get through the door” and a “seat at the table” where decisions were being made. At an individual level, this means patients get all of the information and options to participate in an informed decision, that takes into consideration their personal preferences and values. So, if patient revolution means that we have passed the “tipping point” where patients are routinely invited and treated as important stakeholders in consultations and at decision-making tables, then, yes, there has been a patient revolution. Moreover, it is clear that patients have no intention of retreating. We are becoming more sophisticated in making sure that patients are informed and confident in their participation, so our opinions are heard and acted upon. And we are indeed delivering value as partners in a patient-centred healthcare system.

The needs for navigation services were as varied as the individuals in need. More often than
not, the person who recognizes the need is a family member, friend or neighbour and only
sometimes the person in need of services or a healthcare provider.

Many calls were requests to sort out what type of service to turn to in order to solve a particular issue or problem. Many only needed reassurance that they were on the right track and were doing all they could for a loved one. Some clients wanted assistance in finding and choosing a family physician. Others simply wanted up-to-date health information about their condition and what the options were in order to prepare for an appointment with their physicians. A lady called and wanted me to accompany her older sister during admission to hospital for open heart surgery. A lady called worried about an elderly neighbour who was seriously deteriorating and living in squalor. Some were desperate either with an acute sudden onset of symptoms or because of long outstanding pain and disability, getting worse while waiting for surgery.

Ten years ago when I first started to explore the idea of offering a personalized health
navigation service, an on-line search produced only two results related to health navigation: cancer care navigators in Nova Scotia and a private navigator in the U.S. focused on optimizing benefits of health insurance plans.

A Hospital CEO Perspective

Today the term “navigation”, although still not well defined, is commonly used in healthcare in Canada. There is even a merging profession of navigators with defined roles and responsibilities and certification. There is also talk of a “system of navigation” (NSM LHIN North Simcoe Health Integration Network in Ontario).

The needs that emerge from the navigator’s stories can be grouped under different themes:

• Access to services
• Advocacy
• Knowledge of available resources
• Knowledge of wellness, disease or condition
• Understanding the steps in the healthcare journey
• Accompaniment and interpretation of health lingo
• Comprehensive care plan and coordination
• Access to reputable health information

Why is navigation needed?

• The complexity of the system and lack of roadmaps
• The shift away from hospital based care to multiple community providers
• The importance of self-care and ownership of one’s own health
• The importance of the role of the family support system
• The need for culturally sensitive health services and information

Who provides navigation services?

• Self-navigation: use of internet, info-lines, informal networks
• Family members: parents, spouses, children
• Primary care providers: coordination of care and referral
• Every care provider: gives information and assists with transitioning into the next phase of the health care journey
• Health professionals within the system with official roles as case managers and navigators
• Personal navigators
• Societies or groups focused on specific conditions or diseases, peer navigators
• Police, firemen, pharmacists, emergency personnel all provide health services

information within their roles and sometimes referral to specific services.

The majority of people have only occasional need for health care services; when an accident
or illness strikes suddenly, all of us, even those of us who work in healthcare, find out how
little we actually know. There is no road map and every person’s journey is different and very personal. A person’s health record should be available on the computer to the patient and family caregivers who are part of the circle of care. This will greatly assist with managing one’s own care. Awareness of the need for health navigation will help accelerate the growth of a response to that need.

Canadians are living longer, rates of chronic illness are increasing, and as Baby Boomers reach their golden years, wellness and independence are priorities for this very unique consumer group. Baby Boomer behaviours and attitudes towards technology and health information suggest a growing desire for health care services and resources that promote self and personalized approaches to care, allow for control of personal health information, and provide convenience all with the goal of maintaining independence and quality of life in their community.

Consumer engagement presents an opportunity for health systems to develop new solutions that engage and leverage consumers to improve accessibility, efficiency, and quality of health services while reducing costs. This essay shares highlights from the paper “Transforming Health Care through Consumer Engagement: The Key to Quality and System Innovation” on how consumer engagement and innovation adoption can help achieve health quality and system sustainability goals.

The first step towards engaging Canadians more actively in managing their own health is the implementation of consumer driven, personal health records (PHR). Research suggests that 61 per cent of consumers want their physicians, hospitals and/or the government to provide them with a PHR or online medical record. Giving patients access to their health information creates empowered and informed consumers who can much more actively engage in health care systems. Informed consumers with their own PHR can make better decisions about their own health care needs and goals, and can effectively monitor and safely manage their chronic conditions including medications and treatments. A more engaged and informed consumer of health services can also serve the needs of health professionals by providing more accurate information about their health, their health history, the medications they are taking and diagnostic tests they have undergone. Physicians and nurses rely on accurate patient information for achieving quality patient care outcomes, and consumers who are well informed are more likely to achieve quality health outcomes. Furthermore, integrating PHRs within health information systems can create a streamlined flow of information and communication between consumers and professionals. Not only are PHRs an important opportunity for consumer engagement, but they also offer potential cost savings in the health care system. PHRs enable the development of online personal health information systems and appointment and referral management systems that can potentially reduce administrative costs and may reduce demands on the health system and ultimately improve wait times.

The second opportunity for enhancing consumer engagement is about managing health
information. Patients are increasingly turning to the Internet for health information regarding personal or family illnesses and treatments. Canadian health systems need to improve their presence online to ensure that patients know where to turn for reliable sources for information.

Online personal decision support tools and applications can help consumers more effectively manage their own health and wellness, navigate the health care system and make more effective, informed health decisions. Opportunities exist to utilize social networking to engage consumers more actively in their health care by leveraging their desire for social connectivity.

For example, social networking capabilities that interface with PHRs and information systems could result in easy and valuable communication between consumers and health care teams.

Online patient support sites, such as Patients-Like-Me, have provided successful models of how health-focused online sharing of experiences and information can support, inform, and improve consumer awareness of personal health care challenges and best practice options for care.

Finally, it is also time to rethink health care service design with the changing needs of
consumers in mind. Canada’s major challenge in home care provision is the management
of aging citizens with multiple chronic or complex illnesses. We need to redesign health
care services and deliver care to consumers in their own communities and homes, in a way
that helps consumers remain informed and connected while at the same time supporting
independence and quality of life, particularly for seniors. Health sector leaders need to redesign services using innovative technologies that engage patients in managing their health needs in the comfort of their own homes. Technologies that support home monitoring and surveillance technologies to connect patients to health service providers when needed, and that build supportive networks in our communities, will enable seniors to remain at home with greater quality of life with their families. There is considerable value in remote home and health monitoring and surveillance for family and friends who are very willing to provide support and care for their ill loved ones, from afar or near, but who desire options to more easily stay connected to them to make those interactions more manageable and meaningful within their busy lives. Thus, there is clear demand for designing and implementing creative ways to actively engage consumers by promoting interconnectivity between patients in their own homes, their families, nearby clinics, and even community health teams to manage transitions in care and offer consumers personalized services which maximize independence, improve patient and family quality of life, and reduce reliance on acute care services while containing health system costs.

Canadian health systems need to learn to support patients and commit to meaningful consumer engagement in order to achieve health system transformation. The adoption of innovative information and communication solutions that actively drive consumer engagement in health care will make a significant impact on system-wide improvements related to accessibility, efficiency, and quality while reducing costs.