It’s Time to Put the Patient in Queen’s Park

By: Zal Press and Dawn Richards

September 28, 2014

As dedicated patient experts we welcome Ontario Premier Wynne’s Mandate Letter to Health Minister Eric Hoskins. We are encouraged that in an interview with the Globe and Mail (Kelly Grant, July 11, 2014) Minister Hoskins committed himself to “improving the patient experience” and the Mandate letter leads with a priority to “Putting Patients at the Centre”.

HeadshotIn our many patient roles, we’ve heard the platitudes of “patient-centred care” and “patient experience” bandied about like badminton birdies that can fall to the ground with nary a concern and then replayed with the same casual whimsy.

Will this time be different? We’d like to give Minister Hoskins the benefit of the doubt and support his intent with a vision that embraces the opportunity that a focus on patient experience provides.

We start by providing a common understanding of the “patient experience.” The Beryl Institute, a global community of practice and premier thought leaders on improving the patient experience in healthcare, defines patient experience as:

the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.“

This definition tells us that patient experience is more than just satisfied patients. Satisfaction is the result of a single interaction that can evaporate, while experience is the full narrative arc that leaves a lasting impact. The challenge to our healthcare leaders in policy, administration, professional practice etc, is to undertake methodologies for engaging patient and family voices that ensure the best service, safety and quality outcomes.

How do our institutions currently stack up to the challenge of patient experience? The Change Foundation studied the emergence of Patient and Family Advisory Councils (PFAC) in Ontario since the enactment in 2010 of The Excellent Care for All Act (ECFAA), which mandated that hospitals “establish a patient relations process to address and improve the patient experience.” The Change Foundation study, “Patient/Family Advisory Councils in Ontario Hospitals: AT WORK, IN PLAY (Parts 1-3)” (April 2014), found that almost half of councils interviewed were in infancy. Furthermore, while the report identifies 7 categories in which the PFACs are accountable, there is no dedicated position representing patient experience. For many institutions PFACs are simply the first tactical step to engage with patients, and by no means the only patient engagement strategy available.

It is our view that a commitment to prioritize patient experience must come from executive leadership, to instil patient centricity as a core principle of the institution and its culture, demonstrated through a strategic partnership with patients.

We call on Minister Hoskins to act BOLDLY in his capacity as the province’s healthcare leader and to role model the expectation mandated by the Premier by “putting patients at the Centre.” How? By bringing the patient voice to the Ministry with the creation of:

 The Minister’s Patient and Family Advisory Council.

 We view this Patient Council as a professional advisory panel composed of dedicated patient experts with the appropriate professional patient experience and the personal experience of chronic illness informing their perspective. There are numerous qualified patient experts who fit this criteria – people who:

  • Are engaged in the global conversation around and are familiar with patient-centred care and patient engagement initiatives
  • Understand the need to redevelop the language of partnership in the discourse between patients and healthcare professionals
  • Have a demonstrated understanding and experience with patient and family advisory councils
  • Have demonstrated a capacity for building, supporting and advocating with a patient voice.

As The Change Foundation report emphasizes, patient experience is an evolving trend that demands that this Council must perform at the highest level. Consequently we do not view it as a volunteer position, as is common in hospitals. Rather, its members must be properly compensated on equal terms as other expert advisors and consultants. They need to be accountable and perform according to a specific scope of work in order to have maximum impact.

The Minister’s Council will advise on ministry strategies with the exclusive objective to improve patient experience. By applying patient experience across the breadth of the ministry, Minister Hoskins would be faithfully demonstrating the fundamental principles of collaboration and transparency that form the core of the Mandate letter from the Premier.

Ultimately, if Minister Hoskins wants to deliver on his promise to improve the patient experience, he’s going to have to walk the talk, and that means making patient influence felt system-wide. It’s time to elevate the recognition of patient experience as the key driver of system transformation if we are to build a compassionate and sustainable system that serves the health needs of the entire population.

It’s no longer good enough for healthcare services to be delivered without the patient voice having a reserved seat at the government table. We believe that a dedicated role for patient experience, provided by a patient’s voice, has the highest potential to develop meaningful patient centred strategy, the most effective tactical operations and the best health outcomes for patients and families. It’s time to integrate patient experience into everything the Ministry does, rather than function as a solitary initiative.

It’s time to put the patient in Queen’s Park.

 Click here to follow the debate on the topic at HealthyDebate.Cahealthydebatelogo


Zal Press is Executive Director of Patient Commando Productions, a producer of authentic patient experience programming for health care professionals, and Co-Chair of the Beryl Institute Global Patient and Family Advisory Council.

Dawn Richards is a science and patient consultant. She is Vice President of the Canadian Arthritis Patient Alliance, the first patient advisor of the Canadian Medical Association’s Wait Time Alliance, a member of the Institute Advisory Board and Ethics Committee of the Institute of Musculoskeletal Health and Arthritis (CIHR), and a Patient Panel Reviewer of the BMJ.

Canadian Women Changing Healthcare

I happened to catch an episode of the CNN series “The Sixties” which featured the rise of the feminist movement. It caught my immediate attention as we here at Patient Commando were hard at work preparing our 2nd Annual Canadian Women Changing Healthcare.

It had escaped my memory that in my lifetime there was a time when there were quotas on the spaces available to women  in medical, dental and law schools. There was a time when airline stewardesses had to be single, with soft hands and were forced to retire at the age of 32. There was a time in my lifetime that women marched in the streets fighting for equality and recognition.

The episode reminded me of  many women who led the way – like journalist Gloria Steinem who infiltrated Hugh Hefner’s Playboy empire, Cosmopolitan editor Helen Gurley Brown (Sex and The Single Girl), author Betty Friedan (The Feminine  Mystique) and the National Organization of Women (NOW) who played such important roles in galvanizing what turned into a global movement.

I couldn’t help but think of the many parallels between that time and certain realities that exist in our healthcare system. As Patient Commando and others have pointed out before, 78% of the health workforce is female but only 19% of the CEO’s are women. Only 14% of healthcare companies boards are women while there isn’t a single female CEO of a Fortune 500 healthcare company. This imbalanced representation at the top echelons of our health institutions and industry stakeholders is reminiscent of the same power and gender imbalance that was challenged in the ‘60s.

What this episode highlighted for me was the ingenuity, creativity, passion, and clarity of purpose of the many women who fought courageously to transform our society. Today, so much of the work that’s being done to transform our healthcare system is being led by brave, strong, dedicated women who have taken risks, asked for few rewards, and challenge the norms to create a compassionate system that’s responsive to the needs of the patient.


Florence Nightingale

The 2nd Annual Canadian Women Changing Healthcare honours a group of women who’ve shown selfless leadership, relentless commitment to change and act as role models that all of us, men and women alike, should seek to emulate.  They represent the health spectrum – professionals, educators, business executives, creatives, and of course, patients. The work they do impacts and benefits all of us.

There’s generally unanimous agreement that system transformation requires prioritizing patient experience.  At the forefront of this change are women like these. Patient Commando is honoured to be able to give them well deserved recognition and we  will continue to advocate that the leadership of our institutions expand the inclusion of women at the top echelon to ensure our system fairly represents their status, their impact and their potential to transform a system many citizens believe  needs new vitality, genius and imagination to meet the needs of our population.

Our 2nd Annual Canadian Women Changing Healthcare reminds us all that the movement that started in the 1960’s still has lots of work to do. There are still barriers that need to be overcome. We can all be grateful that women such as these are doing the hard work that’s making such a huge contribution to the hope of millions of us who will benefit from the improved health outcomes that result from their effort.

– Zal Press, Executive Director, Patient Commando



Dianne Carmichael

With over 25 years of extensive executive management experience, Dianne has had the opportunity to work in four distinct industries – Consumer Packaged Goods, Technology, Financial Services and Healthcare. She has been involved in public, private, multi-national, entrepreneurial and growth companies, rising to President and CEO in two of those industries. [Read more…]

Yael Cohen Braun

Yael Cohen is the founder, president, and CEO of Fuck Cancer, a cancer education organization aiming to activate Gen-C, generation content, to engage with their community about early detection, preventative lifestyles and communication around cancer. [Read more…]

Lynda Covello

Lynda was diagnosed with Type 1 diabetes in 1973, and has lived successfully with the condition for more than 40 years, through many career and life challenges, including two successful high-risk pregnancies and a high-powered international legal and business career.  [Read more…]

Sherry Dupuis

Sherry Dupuis is the former Director of the Murray Alzheimer Research and Education Program (MAREP), and a Professor in the Department of Recreation and Leisure Studies at the University of Waterloo. [Read more…]

Jodeme Goldhar

Jodeme Goldhar’s passion has helped healthcare organizations break out of their siloes to work together for a common goal – enhancing the care experience and outcomes for their most vulnerable clients. [Read more…]

Marlene Grass

Marlene has been involved in the world of Diabetes since the mid seventies.  In the early eighties she  initiated the first parent support group in Durham Region.  In 1989 she launched the first and only one of its kind, “The Charles H. Best Diabetes Centre” as a registered Charity to provide ongoing Type 1 diabetes education, management and support to children and youth and their families in Durham Region. [Read more…]

Michele Hepburn

The 3C Foundation of Canada is a registered Canadian charity devoted to enhancing the quality of life for children and adults living with Crohn’s, colitis and colorectal cancer (the 3Cs). Under Michele’s leadership, The 3C Foundation has grown from start-up in 2009to a dynamic, well-respected, patient-centred organization that supports and delivers programs and services to the 3C community.  [Read more…]

Nicki Kahnamoui

Growing research and experience demonstrate that participation and engagement in arts and cultural activities has significant benefits for the health of individuals, populations and the sustainability of health care systems. [Read more…]

Miriam Kaufman

Miriam Kaufman is a paediatrician and adolescent health specialist at SickKids in Toronto, Ontario.  She is the Head of the Division of Adolescent Medicine at SickKids and a Professor of Paediatrics at the University of Toronto. [Read more…]

Liz Rice

20 years of having very poor health, made Liz Rice very passionate about encouraging others to invest more in theirs. Liz is an Environmental-Health Speaker specializing in toxicity and the interaction between the environment and human health.[Read more…]

Dawn Richards

Dawn is a science and patient consultant. She received her PhD in Analytical Chemistry from the University of Alberta, and has spent the past 15 years in various roles, as a: bench scientist, project and operations manager, technology transfer and commercialization manager, and business development officer. [Read more…]

Andrea Shewchuk

The term “creative process” is most commonly heard in association with art.  Rarely are its aspects appreciated in the arena of health+wellness. [Read more…]

Sandy Smeenk

Sandy Smeenk is the Executive Director of the ILC Family Centered Child and Youth Chronic Pain Care Program, the first charity in Ontario and Canada with the dedicated focus to bridge gaps in community based care for the 2.2 in 44 children, adolescents, young adults and families living with complex chronic pain diseases including those that are hereditary.[Read more…]

Carmen Wyton

Life is unpredictable…I have committed every day to filling it with things that bring me energy, while helping others, and demonstrating a model for building a caring community. [Read more…]

Over 200 Artists tackle the Illness Experience

“Mira, Mira on the wall” was the refrain that came to mind when young Mira Berlin (MFA) presented her idea 3 years ago for an art show representing the personal illness experiences of artists. After she left my office, I thought about whether the refrain’s connection to the fairy tale was applicable to the concept.

Three years later, the fairy tale reference can be discarded. A collective of European academic, art and industry leaders has produced a vivid expression of illness through the eyes of artists working in collaboration with patients.

Spain-Coexistentia-5‘Perspectives – Art, Inflammation and Me’ is an initiative designed to add a different dimension to the current understanding of immune-mediated inflammatory diseases (IMIDs) and their impact on patients and society.  The exhibition debuted at the 9th Congress of the European Crohn’s and Colitis Organisation (ECCO) in Copenhagen, Denmark on February 20 with more than 100 unique pieces of art.

Mira was interested in the subjective experience of disease to showcase the potential of Fine Arts “to transcend the bounds placed on patients upon their diagnosis” and to highlight “the incredible power of images to demystify illness and reconcile us to disease, and even to death.” At the time, her thoughts were rare and she prepared a report that identified the state of illness experience as expressed in the arts. It was clear that mainstream art didn’t welcome the theme and many artists were resistant to sharing their experience through their creativity.

The courage of her ambition, however, is mirrored in this initiative. Over 200 artists from more than 40 countries around the world participated. The collection – the result of collaborations between artists and patients – provides new perspectives into some of the unknown, ignored, or misunderstood burdens associated with these conditions.

Foremost among the artists from more than 15 universities are 12 Canadian art students from Calgary’s Alberta College of Art and Design. Their work is inspired by the stories of patients with chronic conditions such as Crohn’s Disease, Psoriasis, and Rheumatoid Arthritis.

We’re privileged to have the opportunity to share all 12 images from Canada and 9 selected works from international contributors. The exhibition’s next scheduled stop is at the EULAR (European League Against Rheumatism) Congress in Paris, June 11 to 14.

While Mira has moved on with her academic and artistic career, it would be an amazing outcome to attend in Paris so I’d have the opportunity to say out loud and without fantasy, “Mira, Mira, …they’re… on the wall”.

Select a thumbnail to see a Canadian image and story.

Untitled by Nicole Brunel and Iain Chisholm
Wild Cards by Fong Ku
Trapped Within by Micaela Blondin de Boer
Presence by Zakhari Halas
Other Side by Daniel Cleghorn and Iain Chisholm
Nothing But Strength by Lizzie Carr
Me and you Forever, and ever and ever by Matthew Ng
Kathy's Hope by Kathryn Cooke
I wished that I had it instead of him by Amy Pon
I Will Manage Whatever Happens by Sally Mayne
Endeavor by Chloe Diana Saunders
Define by Terese Mullin

Select a thumbnail to see an International image and story.

Jordan- Dying...Woke up to life again
Puerto Rico- Fusion (b)

Who’s important in my end-of-life plan?

Editor’s Note: This article was originally posted on  a website whose mission and mandate is to help navigate personal and medical decisions as life’s end nears.  Founder, Kathy Kastner, encouraged me to tackle the subject, after all, who’s a better candidate for an abrupt, or unpredictable ending, than a 61 year-old male with a life-long chronic illness. Its definitely a touchy subject, but she gave me some tools and direction to get started. Here’s my first take:

Who’s important in my end-of-life plan?

Contemplating that question, it took me a moment to realize that “I’m important!

 Taking Inventory of Who I Am

It starts here, similar in some respects to a computer chip, the intelligence that powers the organism, I am:

  • 61 years old, orphan son
  • Living with Crohn’s disease for 30+ years, with multiple surgeries, treatments, medications
  • Husband of 32 years in a loving relationship (more on this later)
  • Parent of 2 young adults who are compassionate, thoughtful, open minded critical thinkers.

Who are my ‘important’ extended family relationships?

  • I’m a younger brother (yes at 61) he and his wife are present in my life.
  • I’m a cousin to people who are important to me. Some of these relationships play major continuing roles that are vital to my existence.
  • I’ve got in-law status.
  • I’m an adopted member of an Israeli family.

I’m going to have to determine what guidance I’ll have to give them so they’ll feel comfortable with themselves about my situation.

Beyond blood: Chronic illness is a team sport.

As a Crohn’s disease patient, I have several team members. While I may be the Captain of my Team, for over 30 years I’ve relied on someone in particular who’s played many important roles. It’s no secret that my wife, Cec, has been on this trip with me for decades. She’s managed my life and my kids when I’ve been in and out of hospital like a revolving door. I can’t imagine outliving her, after all, she’s one of those damn healthy teachers. So I’m counting on her hanging around to be at my side, supportive and playing the good wife role to the very end.

 My medical team:

I have a family doctor, a gastroenterologist, and a dermatologist, all of whom I see on a regular basis. There always seems to be someone else joining in at times, from naturopathic doctors to physiotherapists, nutritionists, surgeons etc.

I go to a clinic every 2 months to get medication via an intravenous drip. This is another support team – from the nurses who infuse and care for me, to the pharmacists and coordinators who schedule the appointments.

Living with a chronic condition, nothing is simple

As an example: I can have what appear to be simple problems. A skin infection for instance: Lots of people think a course of antibiotics would take care of that. They’re probably right – for most healthy people that is. For me, however, it’s not automatic. One key reason is that my medication, in order to keep my Crohn’s in check, effectively suppresses my immune system.

This makes simple situations like an infected paper cut or an abscessed tooth a significant challenge because antibiotics and the biologic drug I take don’t like each other. Understand that patients are warned that “fatal infections” have been known to occur. This is no trivial matter to me and I’m ultra vigilant anytime I get a simple cut anywhere on my body. I rely heavily on my entire medical team anytime I have a situation that resists healing. The price for neglect could be my life.

 Taking ‘blood relations’ out of the end-of-life equation:

Who else plays a part in my life that’s not superficial? I haven’t ranked them in priority, but there’s a bunch of people who all play an important role in my life and will continue to do so to the very end:

  •       my mechanic
  •       my barber
  •       my professional advisors: accountant, lawyer, investment advisor
  •       my banker
  •       my customers

There’s much to consider, as I consider ‘managing’ not just my own health but those who will likely remain important and very much a part of my life, right up to the end.