Insights March 2013

The Patient Voice A Value Game Changer

Hugh MacLeod and Carol Kushner


Today I am joined on the balcony by Carol Kushner, a champion of the family and patient voice. We have both lived the gap between the theory and practice of patient empowerment.  We begin talking about our personal experiences with the healthcare system – mine as a patient, Carol’s as a family member. Nothing like a little unforeseen field work to confirm the importance of the patient experience and voice. Given our healthcare backgrounds you could say we are relatively informed. However, we both found it difficult to ask safety related questions and when we did, we found it difficult to get either attention and/or answers to the questions and concerns we raised.

Bottom line we were in no position to take our business elsewhereWhat haunted us the most was how our vulnerability stripped us of autonomy and power.  In my case I was a relatively informed patient, but I found it difficult to ask safety related questions. I was on my back and worried. In Carol’s case her mom did not want her to raise the issue of a non-functional call bell because she worried that her pain medication may be delayed.

Any economist who persists in believing that healthcare is a market product just like any other has not spent any time as a patient.  You give up your body and power to an institution and a team of strangers. They have all of the technical knowledge, you are on your back and you are scared.  The last thing you are is a shopper and bargaining agent.  There is nothing new in what we experienced – it is the reality of being a patient in a system that struggles to get things right.  Perfection is unattainable, but we will never approach perfection unless we commit to settling for nothing less. Right on cue we are interrupted by the Ghost of Healthcare Despair, who shouts:

“Patient-centered…patient experience…patient voice…you are dreaming! Nice slogans. They make for good promotion and campaigns. Patients are in pain, discomfort or anxiety. They are vulnerable. They cannot assert themselves. Providers? They are not taught about customer service. They view their own time as a precious commodity. Patients make demands of their time. So good luck trying to change the power structure, or the way providers behave and communicate. Of the many articles and studies that make up my robe you should read a 2009 Discussion Paper by Steven Lewis titled “Patient Centred Care – A Introduction To What It Is and How To Achieve It”.

The discussion paper talks about a number of specific challenges like:

  1. On many levels the nature of the relationship is inherently unequal – patients are by definition dependent on their provider.
  2. Much of the time, patients are in some degree of pain, discomfort, or anxiety. They are not at their peak, they are vulnerable and therefore, have reduced capacity to assert themselves and take control of their care.
  3. Status and other hierarchies come into play. Providers are not inculcated with a culture of service, they see patients as fundamentally different from customers.
  4. They view their time as a precious commodity (which it is) and organize their practice around its most efficient deployment –what do I need to do to cope with the demands.
  5. Huge risks (real or perceived) in trying to change traditional power relationships and modes of communication and behaviour.

We have an admirable health system, a health system that is continually evolving to keep up with changing conditions and demands. It is not a system of perfection. No matter how advanced the field of medicine becomes one constant will always remain and that is medical attention and care services will be provided by people, people that are no different than you and I. It is the effectiveness of the interaction between care providers and patients that determine the efficiency and safety of the system. Beyond technical knowledge and skills, we believe quality healthcare is based on three elements; Communication, Trust and Caring. When one of these elements is missing patient safety and quality breakdowns occur.

From a patient perspective, this is our health system, we are shareholders, we pay for it through taxes and we want it to be safe and reliable. Interesting thing about healthcare, just about all the programs (medicine, nursing, physiotherapy, pharmacy, etc.) are in the faculties of science which are the “hard sciences”, the logical and rational disciplines, the ones that are based in evidence.  A good thing!  Yet often what gets lost in all the science and rigor – is that healthcare is a people business. It is all about building relationships that are resilient enough to deal with power dynamics but adaptable enough to sustain and lead change. It’s about communicating, trusting and caring.

Creating a new patient safety future will require visionary leadership, competent and patient safety focused management and governance, a fully engaged workforce and a new conversation with the patient, the customer. It will also require a sound cultural and accountability change strategy. Are you disturbed by the time and organizational energy focused on the competitive association of professional, educational, administrative leadership elite’s as they struggle and compete for insight, influence and remedy?

Are you disturbed that to give legitimacy for their actions and personal agendas all these groups wrap themselves around “I am doing this for the patient”?  Are you disturbed that often the stakeholder elites often deal with incomplete information, often resulting in counterproductive, uncoordinated and unsafe practices?

What we are talking about is organizational culture with its customs, traditions, and practices played out in day to day power/political relationships. As we said previously we need to create new conversations about what we value, about how patient-resident-client focused we are, and finally, we must raise responsibility and accountability questions. Are you making patient safety transformation meaningful? Have you made the transformation story personal? Are you role modelling the desired mindsets and behaviours? Is your team strong and committed to patient safety transformation? Are you relentlessly pursuing patient safety transformation impact?

These questions challenge all of us to include the voice, the opinion and the choices of the patient, client, resident in all aspects of care. It means an educated and informed patient who has the knowledge and skills to make good decisions about their care. It means honouring - “nothing about me without me” to reframe the conversation. It also means providing tools and education to front line providers to equip them for the new conversations. In a recent paper titled “Measuring What Matters: The Cost vs Values of Healthcare” the authors make the following recommendations with regards to the patient and family voice:

  • Giving patients and families tools to manage their own health and wellness, including complete transparency and access to personal health information, to support health decisions that achieve quality of life.
  • Transforming health system data structures, from the existing provider-centric structures, which capture health transactions in organizations, to interconnected consumer-centric data that capture each individual’s care transactions across the continuum of healthcare services.
  •  Attaching accountability to all stakeholders to achieve meaningful consumer engagement across the continuum of care. This includes incenting patient-provider-institution collaboration.
  • Implementing an inter-professional model to coach and mentor Canadian to achieve quality of life, across the continuum of care.

One way to speed up the transformation of your organization on the path to patient-centred care is to involve patients (current and former) and their family members on the teams responsible for planning, implementing and evaluating safety and quality initiatives.  The insights these volunteers bring to the table can be worth their weight in gold.  While is it true that healthcare workers are also patients themselves (or at least potential patients), this role usually takes a back seat when they are at work because of their  professional responsibilities and perspectives.  Engaging with patients and family members who have been harmed by healthcare can be particularly rewarding because their motivation to partner with your organization is likely to be very strong.  Generally the impetus for them to work with healthcare providers is a desire to make sure that what happened to them (or their loved ones) never happens to anyone else.  As organizations experiment with new ways to include the patient voice, they may begin to question old ways of doing things and make breakthroughs in improving patient safety and quality.  Bottom line:  there is simply no better way to ensure that the patient perspective is reflected in your work than to include them, listen to their input and respect their unique contributions.

We can hear the Ghost of Healthcare Despair rattling chains of anxiety.

“The System will say this is way too risky!  People who have been harmed by our care are going to be angry.  If you include them, they will disrupt your meetings and make impossible demands.  You can’t expect these folks to be effective partners.”

We have very bright people working in healthcare, some of the most intellectually gifted folks…. ”Knowing is not enough; we must apply. Willing is not enough; we must do”.Goethe


Next Week’s Guest on the Balcony of Personal Reflection: D. deKorne in a conversation titled “Black Boxes In Operating Theatres”. 

Click here to see the First Series of Ghost Busting essays.


Click here to see essays from the Second Series: The Ghost of Healthcare Consciousness.

About the Author

Hugh MacLeod is CEO Canadian Patient Safety Institute. Carol Kushner is Co-Chair Patient For Patient Safety Canada (a CPSI program)


Lewis S. Patient Centred Care- A Introduction to What It Is And How To Achieve It. Discussion Paper. 2009

Snowdon A. Schnarr K. Hussein A. Alessi C. Measuring What Matters – The Cost vs Values of Healthcare. IVEY International Centre for Health Innovation. 2012 



Darrell Horn wrote:

Posted 2013/03/14 at 12:04 PM EDT

I'm always somewhat bemused by the notion that there is some sort of magic dividing line that separates patients from providers. Because of course, at some point in time, we are all patients. And the odds against (per Baker-Norton et al) are relentless. In my time, working in patient safety and advocacy, I have observed many of the most distressed and activist 'patients' to be healthcare workers who have been at the receiving end of adverse events, discovering in a most traumatic fashion that their institutional trust and expert knowledge provided them or their loved ones with little or no protection from the most serious of harms. There is only one boat.


Tanya Barnett wrote:

Posted 2013/03/15 at 12:20 PM EDT

As a member of PFPSC, I am so looking forward to meeting you, Hugh! I really appreciate the balance you give to your approach to increased patient safety; the humanness of healthcare workers and the patient vulnerability and expectation. Your statement "...quality healthcare is based on three elements; Communication, Trust and Caring. When one of these elements is missing patient safety and quality breakdowns occur." is beyond accurate. If we had had this trinity working at the time our daughter was a patient, perhaps she would be alive today. I thank you, and lift you up, encouraging you to continue in your collaborative, yet insistent way, to push for safer healthcare. Standing together, we will see change.

Do No Harm: Jess' story


Rob Robson wrote:

Posted 2013/03/20 at 10:32 AM EDT

Thank you Carol and Hugh for your passion about this most important and central topic in the patient safety field.

Your comment about health disciplines being examples of "hard" sciences based on "evidence" is only partly true. Almost universally the health disciplines limit the evidence they rely on to that generated by quantitative research - the classic example being the RCT - randomized controlled trial. If we accept that qualitative research is ALSO scientifically valid and capable of producing reliable data then we will open the gates to rich new sources of "evidence" which will make it easier for the patient voice to become a powerful source of direction to improve the care we provide.

Far too often I hear the comment that "patient stories are just anecdotes". They are, in fact, when approached with valid qualitative methods, a reliable source of data and evidence. As we are gradually making spaces at the table for patients and families we must also address our traditional reliance on numbers as the only source of reliable evidence. The "stories" from patients, families, and healthcare providers are an equally important and reliable source of evidence to guide our work.


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