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Terry Pratchett: Shaking Hands With Death

Sir Terry Pratchett, the best sellling British fantasy writer who was only eclipsed by Harry Potter, died March 12 at his home at age 66. Pratchett suffered from a rare form of Alzheimer’s disease and was an outspoken advocate for assisted death.

The question I’m left with upon hearing this news is: Was his death UN-assisted?

Sir Terry, diagnosed at age 59, shared his journey with Alzheimer’s widely and publicly while at the same time sparking public debate on the issued of assisted death. From documentaries to lectures he travelled widely to examine the topic. Famously, he was quoted:

“I have vowed that rather than let Alzheimer’s take me, I would take it,” he said. “I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the Brompton Cocktail some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with death.”

I trust he got the death he so yearned for.

This video is the famous Richard Dimbleby lecture at the Royal College of Physicians that he gave using actor Tony Robinson as his voice.

An Open Letter to Minister Lisa Raitt

Dear Minister Raitt,

rsz_raittlisa_cpc1Please accept my applause and congratulations for the courageous and open conversation you had on Canada AM about the details of your health issues.

Its estimated that as many as 20% of women suffer from fibroids. Your experience reflects that of many women – that “sometimes options are not presented” and “I didn’t know any of this until it was too late”. And as a consequence so many women suffer in silence and unnecessarily endure extreme treatments.

In case you don’t know, sharing your story is a breakthrough in leadership echelons for this important conversation. You are correct – there’s a lot of stigma attached to speaking about women’s conditions publicly. Usually its in whispers, in corners, or simply with tears of isolation. Women across the country have been addressing these gaps in treatment, diagnosis, and the social and economic impact by self organizing and sharing their stories.

Your leadership role model will empower women to be assertive voices and participants in their healthcare so that they can act, and get appropriate treatment, before its too late. We have been documenting the rise of women’s voices on the issue of fibroids specifically, and bleeding disorders in general and you can follow the stories of these courageous women who have been building a movement from scratch with little support. Their stories are documented here.

I can tell you that the women who contributed to our series of stories are all cheering your disclosure, as it reinforces their bravery to share and to empower others to do the same.

Leadership comes in many forms. It can be as simple as telling a personal story. Sometimes that’s all that’s needed to change lives. Welcome to the conversation.

Best regards

Zal Press

Executive Director
Patient Commando Productions
@ Centre for Social Innovation - Annex
720 Bathurst Street, Suite 200
Toronto, ON
M5S 2R4

To view the entire Canada AM interview with Lisa Raitt click here. Her frank talk about her health starts at the 5:40 mark.

Discover how a small group of women came together to start a movement dedicated to raising awareness about women’s health issues. Our multi-part series starts here.

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

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…]