Louise Binder speaks at Conference Board of Canada Dinner

In November, CCSN Health Policy Consultant Louise Binder gave a speech at the Conference Board of Canada dinner. Some topics covered included: the dichotomy in our health care systems, working within this basic construct of natural tensions in a world of limited resources, a professed desire for sustainability and growing health care demand. A copy of the speech can be found below. 

"Thank you so much to the organizers for inviting me to speak to you this evening.

And thank you to all of you for coming out to hear what I have to say.

This is the first time in my 22 years doing systemic patient advocacy and health policy work that I have spoken at a Conference Board event.

I pondered this fact as I prepared this speech. I was not sure how to interpret this invitation. You see, I have generally been considered rather outside the mainstream in my approach, a bit too direct, too “wingy” as one researcher described me, I suspect disparagingly.

So does this invitation mean I have gone “soft” and pose no threat to people’s digestion this evening?

Or perhaps this group is actually a secretly “wingy” cell too, disguised as well known business leaders?

Or perhaps the world has shifted so radically in the last while and that wingy is the new conventional.

I rather suspect that we have a perfect storm of all of these circumstances converging these days. We are in an increasingly globalized world where communications keep us aware of events everywhere in real world time. This should theoretically bring us together, make us comfortable in more than just our own skins.

Yet we are as tribal and insular as cavepeople. And the gap between those who embrace the new global environment and those who resist it is becoming a gaping wound that requires more than a bandage to dress it.

In some ways this dichotomy is mirrored by the central tension I have seen in our health care system, public and increasingly private as well, the tension between the population health approach that policy and decision makers strive to achieve and the individual, precision, personalized, targeted therapy world that science is creating for us. Two solitudes it seems – so much the Canadian way.

In my talk tonight I will provide some examples of this dichotomy in our systems and then talk about how we might think about working within this basic construct of natural tensions in a world of limited resources, a professed desire for sustainability and growing health care demand.

First I must explain that I don’t think our health care construct is systematic at all actually but rather a matter of individual management – structures that are managed more in an ad hoc reactive way than by shared vision, values and principles. What we get from the service we require is often only as good as the person doing the job to provide the service or the influence or the advocacy of the person coming into contact with the structure, or all of these.

So what does the health care environment look like today? There are commonalities between all stakeholders in the health care ecosystem in my view- public and private payers, health care providers, both public and private, patient groups, the pharmaceutical and companion diagnostic worlds.

Siloed planning, monitoring and evaluation, reward systems and budgeting prevail.

Reward systems based on short term, narrowly defined and focussed objectives are the norm.

Limited resources are provided but faster, more nuanced responses are expected from all.

Risk aversion abounds meaning that no one wants to try anything new or take a chance.

Centralized policy making but decentralized implementation is often the norm.

Evidence based decision making is professed as the gold standard but systems to collect data and link data systems are not developed.

Sustainability is the new mantra but patients hear lack of access and cost shifting .

And finally,systems are built and managed to retain and sustain the status quo.

And nowhere is this more evident than in the drug budgets and structures.

When I began working in this area we had Health Canada as the gatekeeper of all things related to safety and efficacy and good manufacturing practices for drugs sold in Canada.

The Patented Medicine Prices Review Board was the policying agency for excessive drug prices for Canada.

Then public payers realized that this let in more drugs on the market than they wished to fund, for many understandable reasons – opportunity costs, limited budgets, demographics and on and on.

Instead of having the courage to withstand consumer demand and education patients about the realities of drug funding , that is, that it is there to be the safety net for population health situations, not for individual treatment needs , it built health technology assessment processes, CADTH and, in Quebec INESSS.

In oncology it built cancer agencies and gave them millions of dollars to manage and then wondered why cancer patients perceived that governments considered cancer “special “.

When even these walls did not stop the influx of new high cost and effective drugs it built the pan-Canadian Pharmaceutical Alliance to negotiate collectively- not a bad idea at all but a rather unfortunate stepchild that is still not the final decision maker about what provinces will pay or what they will pay for or even whether they will all enter into or stay in the negotiation process.

Each province still re-reviews all of the reviews that have come before.

Duplication, inefficiencies, resource misallocation and uncertainty abound.

All in the name of sustainability of the existing system.

But is that the goal we should be seeking?

Because in fact change is taking place and we see it so sustainability is not actually being achieved I would submit.

While it is true that everyone deplores and fears change, it will happen organically or sometimes by revolution , whether we participate actively or do nothing ( which is actually doing something).

The only control we have is to be part of the process that shapes that change. Even if we do not like the outcome we will understand it.

I submit to you that contrary to the reams of paper that have been written by erudite and well intended academics and thinkers, my experience in the trenches tells me there are no lasting solutions to any of the issues we have in health care.

There are not, nor will there ever be again , (if there ever was) even the illusion, let alone the reality, of stability in our society, including a stable health care system.

So what to do when shifting sands are the new normal?

In my view, the first step is to embrace this reality and stop fighting it. Let it wash over you like an ocean wave but don’t be taken down by it. Because as surely as the sun will rise again, another wave is on its way.

I know this is contrary to the basic human need for control, illusory as that is.

I want to suggest that the lifeboat for managing this constant change, and the only real control, is in process not substance – something I never thought I would believe, let alone say out loud.

This idea is sometimes referred to as social innovation and it is not mine – I am nowhere near that smart. It comes from the likes of Tim Brodhead President and CEO of the J.W. McConnell Foundation until 2011 who describes social innovation as both a destination and a journey and it is the latter part that resonates for me – the idea of devising new approaches to engage all stakeholders and to leverage their competencies and creativity to design novel solutions.

I would add to this that they must be approaches that are not intended to be permanent but rather fluid and flexible and easy to refashion with major seismic shifts in our political, social and economic environments. I conclude this from seeing some amazing social innovations start to lose focus once they become entrenched, for example, the microcredit concept.

This, of course, is a definition contrary to everything that we presently hold dear. It would mean the end of siloed health budgets – in fact of siloed budgets across health, industry, justice, housing and on and on.

It would require an acceptance that there are no good guys and bad guys in health – that there are private sector interests and public sector interests and ( both of which governments themselves have created and actually need to fuel the economy ) . The private sector works in the way private industry has been structured to work – no surprises that it is looking at ways to make money and to find new

things that people want and need. There are also public taxpayer interests seeking best value for precious tax dollars. There are patient interests seeking what the great philosopher Mick Jagger promised – that if you try sometimes, you just might find, you get what you need( or in the case of Donald Trump perhaps what you deserve).

I support the notion articulated by others that the art of convening and dialogue, that appear to be processes to achieve an end, are in fact an end in themselves. They represent a recognition that there has become a fundamental breakdown of trust among civil society actors and between civil society, government and business.

I submit that the reason for this mistrust is rooted primarily in that age old apple in the Garden of Eden, money.

Civil society is being forced to compete for scarce dollars, as are business and government actors- the silo effect in practice, within and across sectors.

The value of working together and the concept that a rising tide floats all boats are lost in that mentality.

But as long as those who win the gladiator race- an individual endeavour if I have ever seen one- is rewarded rather than rewarding the convener, the partner, the collaborator, we are stuck in this old paradigm.

Going back to the beginning of my talk, you will recall that I mused about whether I was becoming “soft” in my advanced years. Occasionally I hear policy makers admit that they think I have mellowed which I think is code for having gone soft.

Actually, I have never been more passionate nor clearer about my belief that, for patients, if one of us is not safe, none of us is safe. I would argue that that motto applies to all of us since at some point we, or those about whom we care, will become patients. We may wear other hats but at some point we will all wear this one.

Unfortunately policy makers want us to live in denial about this reality. They want us to see patients as other than taxpayers for instance- as if taxpayers are some Greek chorus off in the corner- watchdogs to ensure that patients don’t do something wild and crazy like spend money frivolously to make people healthy.

This is a real and dangerous example of the lack of trust that has built up in our society. It plays out in governments spending millions to create processes to ensure that the way we spend money in the health care drug budget represents value to society based on a mathematical model of their creation.

Interestingly the other parts of the health care budget don’t come under anywhere near that microscopic focus.

And why are we angry at the way money is spent in that budget when we have created the siloed approach to metrics that does not ask whether value in one place actual saves in another or creates more appropriate decision making in another?

Risk/ reward systems based on siloed budget numbers are doomed to continue the cycle of mistrust that is at its zenith these days, at least in my 22 years in health care policy work.

I am always amazed that governments mistrust so much when they create the processes by which both private industry and the public, including patients and patient groups, behave.

I have said over and over to government policy and process makers that if they want other stakeholders to be willing to accept how governments spend public money, bring us all in, be transparent about the rules we are working within and let us assist you to build processes and an evaluation and monitoring system for these processes that we understand and is built on principles and practices that are ethical, clear and evidence driven.

This does not mean everyone will get what they want all the time, but they may well at least generally get what they need and be able to manage their health care lives to fill in the gaps

individually that absolutely do exist, and actually have always existed, due to many factors, not the least – the foundational underpinnings of Canadian jurisdictional decision making – the great federal / provincial/ territorial and interprovincial/ territorial/ rural/ urban/ have and have not divides. Let’s accept that reality and move on rather than being immobilized and defeated by it.

I wish that politicians would have the courage to admit this openly, but perhaps it is just not built in to their DNA , at least not until a seismic public shift in awareness prevails a la Ontario Hydro.

I believe that awareness is approaching in health care. Patients and patient groups are aware that the emperor of health care is wearing only a bit of underwear and not a full suit of clothes. They are beginning to collaborate to make their voices heard more coherently, collectively and consistently. Other stakeholders are also starting to join that movement – the movement for solution-based

advocacy in the health care eco-system we all inhabit.

They recognize the wisdom of Martin Luther King Jr. that “ all life is interrelated. Somehow we are tied in a single garment of destiny, caught in an inescapable network of mutuality, where what affects one directly affects all indirectly“

You have a role to lead in your stakeholder group, to lead by example , by taking the risk to embrace a change process and to convene and to create a space for collective, candid dialogue.

This will I believe lead us to what Pullitzer Prize winning author Marilynne Robinson called “ the resurrection of the ordinary “ – a return to civility, hospitality, curiosity and inclusion in problem solving.

Thank you." 

Louise Binder is a lawyer who has been involved in informing the development of health policy and systemic treatment access practices from a patient perspective for more than 20 years. She started her work in this area in the HIV community in the early 1990s after her own diagnosis and before effective treatments were available for HIV. She cofounded the Canadian Treatment Action Council (CTAC) in 1996 that successfully ensured access to treatments and quality care for people living with HIV by working with the federal and provincial governments and other relevant stakeholders to enhance drug review and approval systems, pricing policies and access to liver transplants for this community. She wrote a paper on Universal Drug Coverage a decade ago while Chair of CTAC. She had a special interest in women's issues, chairing the Ontario women's organization Voice of Positive Women for over a decade. She has been involved in these issues internationally as well.