I am joined on the “balcony of personal reflection” by Leslee Thompson. Below us is a grand sight, healthcare with all its moving parts. We are dreaming of a chance to ignite patient-powered healthcare. Here is a brief scene from our REM daydream. We have been invited to an expert panel meeting hosted by Provincial, Territorial and Federal Ministers of Health. The Ministers have agreed to focus on one high-leverage play, the patient voice. And yes, we do have a magic wand, but so far we haven’t had to use it.

The Ghost of Healthcare Hope interrupts:

“I hope you:

• Imagine co-designing healthcare services and incentives with citizens so that they get what they need, and you act on it;
• Imagine a healthcare system that offers timely, quality safe care – and you prove it;
• Imagine a healthcare system that gets the most value for the tax dollars – and you demonstrate it;
• Imagine a healthcare system that can track improvements made and those improvements still needed – and you report it;
• Imagine a redesigned healthcare system operating on the needs of patients – and you do it;
• Imagine a healthcare system that aspires to work in a coordinated way to guide the patient efficiently and effectively – and you attain it; and
• Imagine a healthcare system that seeks advice on how to get results – and you act on it.”

“The expert panel members will see you now,” announces a young man from the doorway. As we walk into the room full of big-name leaders, our hearts start racing. This is the who’s who of healthcare in Canada and we have been given less than 30 minutes to provide insights and advice on how to make the system more patient-centred.

We are struck by the way the stage for this discussion is set. The curtains are all drawn, no one can see what is happening outside but things are abuzz inside the dark mahogany-paneled room. The high-powered people in suits are talking among themselves, surrounded by stacks of reports on healthcare reform and directives from top policy advisors who have been toiling away in back rooms to create “the best plan” for Canadians. In preparation for our arrival they are already uttering all the right words: “Time to get everyone on board, patient-centred care is the next big thing, involving patients is the answer” and we can even hear someone say “Maybe we should have invited one here today so that they can hear our new vision?”

Already we know we have our work cut out for us. As instructed, we had arrived at the gathering with our magic wand which was to help these leaders “make it so,” but there is a big problem. They think they are already there and that change will be easy. Clearly what would be easier for us would be to chime in to the self-congratulatory chorus. The leaders are proud that they have seen the patient-centred light and all will be good if others would just get with the program and follow their lead. “We can give a few more speeches on the virtues of patient engagement” they say, and even invite patients to the table to “represent” themselves. On the surface it sounds like they get it, but we know from experience that becoming truly patient focused and partnering with patients and families takes a ton of work. You have to unlearn and discard long-standing traditions and practices, and behave in new ways. Leadership resolve is critical but we can’t just wave a wand and get them to see what really needs to happen. So if we are going to make an impact here, we have to find a way for them to experience what we are talking about. Quickly.

A glimpse outside fuels our courage to help these professional leaders see beyond their own noses and hear more than their own rhetoric. We draw back the curtains, blow away a cobweb stuck to the window frame and look into the large crowd. We smile at the sight. We walked through this mass of people on the way here but even we didn’t fully appreciate how fast they were moving, how connected they were and how powerful their networks had become. Together they are a colourful mosaic of individuality, while their collective energy is electrifying. They didn’t wait for a professional to arrive and flip on an engagement switch – they were already in motion, already in control. Empowered not through permission of others, but with technology and self-confidence. They are behaving as experts in their own lives; stars in their own show. They are already living the future we were trying to create.

Turning back to the inside gathering, we see the dignitaries taking their seats. They have clearly been together before and everyone seems to have a favourite place around the table. Coffee is served. Formalities begin. “Today,” the speaker says, “we are going to bring patient-focused healthcare to life. We are going to make it all happen with the help of leaders in this room. With all this intelligence around the table we can get to the healthcare system of the future. Once our vision is clear, we will email it to everyone!”

We are forever the optimists and almost never lost for words, but we pause with the sticky feeling of cotton in our throats. How do we help them see that, while their intentions are honourable, their attitudes are archaic and paternalistic? The empowerment train has left the station and most of us are already behind. The speed of change these days is no longer linear, it is exponential. It used to take decades to move from an idea to mainstream; now it takes only a moment to ignite a movement.

It’s time to begin. We open with a “just imagine” story that helps people see the four big trends that are shaping the future and turning healthcare, as we know it, on its head. Predictive data can alert us to risk factors at individual and population levels so that interventions can be focused on eliminating need for downstream treatment of preventable disease and its symptoms. With global databases, clouds and supercomputer analytics at hand, people have access to information that has a profound effect on how they chose to engage with the formal healthcare system. Personalized medicine is the next frontier. It is already allowing us to customize treatments and therapies to highly specialized individual needs. Your DNA is your personal data centre, and it will be your choice who has access to your personal health information because after all, it is yours.

In the future, everything is portable. Location doesn’t matter, presence does. Connections with patients, families, community services, peers, specialists and even hospitals are dynamic. Pharmacy apps will allow individuals to take charge of many aspects of their health that previously required a series of professional interventions. Systems that require you to physically travel to specialists, only to wait for access to someone else’s schedule, will be a thing of the past. Just look at how consumer preferences, big data and personal technology have revolutionized the media, entertainment and retail sectors. Healthcare is different, you say? We think not.

In the new digital, personalized, portable health world, consumer-like power shifts to the patient. Health and wellness becomes the prize. The most admired healthcare teams are grounded in the community, working side by side with the people that they serve. Disease prevention and health promotion are a centrepiece of a society that doesn’t blame “high users” as the reason our healthcare system is unaffordable. Patients have a seat at every table that is making decisions about them. “Nothing about me without me” is no longer a philosophy we aspire to, it is a reality of day-to-day practice, organizational design and policy-making. Patients as partners is the new normal.

The Ghost of Healthcare Hope returns:

“The explosion of technology like handheld ultrasounds and mobile eye exam machines means citizens (the owners) can take health into their own hands. Just think about the impact of embedded sensors on tattoos, and subcutaneous chips that will soon transmit live update data to doctors’ and patients’ tablets simultaneously. This type of technology will disrupt and change the power balance between physicians, patients and other team members. I hope this begins to shape a new future that is predictive, preventative and personalized. A shift from a current reactive sickness and medical model to a continuous and proactive value-based wellness model.

There appears to be a reluctance to see what’s actually going on in the world around you, which leads to solutions in healthcare that are out of context and out of step with the opportunities other sectors are embracing. You need to stop looking to each other and the same old self-interested players as the fixers – it’s time for new partners. Stop thinking and writing reports in isolation and start creating and co-designing the future with those who can really make the changes work.

Today you have an opportunity to stamp out cynicism by building trust, energy and respect among the many diverse players in this ecosystem. This means coming to the table as a partner, an enabler and a learner. Changing mindsets, including your own, is about more than changing minds. It requires bold and truthful conversations among equals. It means leaving your egos at the door and taking some risks. Coming together with patients and citizens will unleash new ideas, generate new conversations and foster a new energy around change. Imagine the power of these previously fragmented and silenced voices joining together to shape a future rather than being asked to merely sanction it.

You will not make everyone happy along the way because change is never easy – but the risks of doing nothing are much higher than moving forward. And make no mistake, if you continue to drag your feet or put your head in the sand, they – the patients and citizens who care about THEIR health and healthcare – will march ahead without you.

Transformational health system leaders, both formal and informal, will not only lead well, but will also lead differently. That means accepting a shift in the drivers of the health system from care providers to consumers, from hospitals to primary/home and community care, and from an emphasis on downstream/acute care to upstream/preventive and wellness factors.”

Helene Campbell (@alungstory) is a stellar example of this evolving empowerment. At a recent conference of over 2500 healthcare leaders she said to us, “I am the CEO of me” as she pulled out her smartphone and smiled. “This is the way I communicate, and this is the way I need to be able to interact with MY healthcare team.” Karen Nicole Smith (@KNSWriter), a patient experience advisor at KGH explains: “I am the one living with kidney disease, doing my home dialysis, waiting for a transplant and managing my health risks every moment of every day. I see you (the system) for about a few hours a month, which is a very small percentage of my life; the rest of the time I am on my own, and managing my situation is up to me.” Like other empowered people she is clear that healthcare experts have a critical role to play in her circle of life, but that while experts come and go, she is the one constant in her healthcare experience. “I have come to realize that I am a lived experience expert, and together with your expertise, we are a formidable team.”

These changes redefine what it means to be a patient. It also fundamentally changes the way we need to work as healthcare professionals. Some advocate for language such as “person-centred care”. We can see their rationale because in fact, in the future, becoming a patient will be what happens when all else fails. In the new world, doctors and hospitals will still be required, but they will no longer be the centre of the healthcare universe. In fact, we believe we are in the midst of a profound shift – a Copernicus moment – where people finally realize patients, not providers, are the central force of our healthcare ecosystem. When this new paradigm is embraced, the natural order of everything changes. That’s the good news. The bad news is that the magic wand you were hoping for doesn’t exist and that means we have to change and adapt ourselves if we are to thrive in this new world.

We pause and look at the leaders’ faces. Some are with us, and others are clearly not. It’s time to bring all of this into sharper focus and make the message more meaningful. We decide to walk over to the window and pull back the curtain. While doing this we are reminded of the quote attributed to the French Revolutionary Alexandre Auguste Ledru-Rollin: “There go my people, I must find out where they are going so I can lead them.” As the light shines through, we hope that we have opened the hearts and minds in a vital few of these leaders. We want them to see not only the choices that need to be made, but how the choices must be made differently than in the past. We think they realize that they have to step out of the comfort of their own room and roles if change is going to happen anytime soon. To help them see beyond the limits of their current perspective, we suggest we take a walk outside and experience being with those that are shaping the world right here, right now. We look out and see a friendly wave from the crowd.

Turning toward the group of leaders, we say…"ladies and gentlemen, the patients will see you now. Are you ready?"

Canada’s health system leaders have an opportunity to provide strategic thinking focusing on the consumer. There is an opportunity before us to reform the Canadian health system to achieve its purpose of improving health outcomes, and to do it better than any other system in the world. The skills, power and passion required to meet this challenge today are present in abundance… so let us begin.

This is a never-ending story … stay tuned for future chapters.

Nest week: Understanding Organizational and Health System Spaces: Listening to Hear by: Hugh Macleod

See essays in this series

See essays from series #2

See essays from series #1

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