What is it with respect and patients?

Patients deserve respect. Well….yes.

In healthcare today there is much being made of the need to respect patients, to treat patients with respect, to respect the patient voice. So I wondered, why all this talk about respect for patients?

There is some talk of the need to respect doctors. They get do it automatically by virtue of their life and death skills and a long tradition but patients are increasingly challenging their doctors.  There is little talk of the need to respect nurses and other frontline staff who provide crucial hands on care, but there should be.  So it just seems mostly to be about patients and how they should be treated.

Does the need to focus on respect for patients mean there is a regrettable lack of it and everyone in healthcare needs to be reminded?  Didn’t mama teach us to respect people? But patients are people. Hmmm…. or maybe they aren’t. People that is. In the eyes of healthcare.

Are Patients People in the Eyes of Healthcare?

It doesn't help that when we come for health care we are often at our most vulnerable, in pain, afraid, possibly dying.  This exposes our weakness and our mortality. And none of us is that comfortable with being defenceless or even mortal. So as humans, I think we feel the need to distance ourselves from vulnerability and death. And one way to do so, is to see those who are sick, in pain, or dying as something slightly different from us... as patients.

The healthcare professionals who deal with us know we are people of course. How can they not? They, themselves, are often on the other side of the bed, as it were.  For our healthcare colleagues it is a challenge to be empathetic and not get sucked into an emotional maelstrom - hence the need for professional distance. But still, when those caring for us professionally wrap us up tightly in our role as 'patient', it is harder to see the person at the centre. 

This is one of the challenges of patient-centred care.

When Patients Become Advisors 

There is a difference between a patient and a patient advisor. When patients move to sit as advisors with professionals on the same side of the table, how are we to be viewed? 

It is in relation to the relatively new advisor role where much ink is expended talking about respect.

I wondered about what respect is, what it means in the context of advising and why all this talk about the need for it.

How Are Patient Advisors Viewed?

As people, are we respected?

I think that most have a feeling of respect or perhaps awe for those of us who have gone or are going through tough stuff and are still standing. I think it is a normal human response. "Wow! You climbed Mt. Everest, you survived a brutal accident, you are struggling through cancer..." and so on. The corollary is "I'm not sure I could and it scares me."

As advisors, are we respected?

From many of our healthcare colleagues there is a genuine gratefulness for our willingness to participate in spite of our sometimes significant trials and tribulations with our health and the healthcare system. And some of our colleagues see advisors as unruly and ungovernable and are wary of working with us.

As more and more of us become advisors, healthcare professionals wrestle with how to deal with us...

• As patient advisors, does professional distance continue to apply when we are now in the role of advisor -- or where we may have been the caregiver and not the patient at all?
• Are we scary, emotional creatures who need to be controlled with a separate set of rules carefully wrapped up in respect so as not to offend?
• Are we truly colleagues? And if so, how does that work?

I think, however, when the healthcare world talks about respecting patients, it is often around our role as patient advisors.

How Are Patient Advisors Treated?

How we are treated depends in part on how we are engaged. As patient advisors we contribute in different ways:

• Telling our story 
• Sharing our experience
• Contributing our expertise

There are the stories within our experience. There is the experience of our entire journey. And then there is what we have learned from our encounters, our journey, and our learning about health and healthcare.

Does telling our story lead to respect?

We did not chose our health issue or "work" at it, it just happened. We can provide you our stories to use as -- your inspiration, your context, your data -- and expect to be treated with common courtesy when doing so. In many cases, telling our story requires the courage to share the deeply personal, and that is honoured and respected.

There is another level of respect. Beyond the feeling of respect, there are actions that demonstrate respect.  

If as a listener, I commit to learn from the stories and then make changes for the better, I show respect in my actions. 

We tell our stories to drive action. In my view, respect shown in actions is much more powerful than respectful feelings. It shows respect for our intent and goal.

Does our experience warrant respect?

Stories are episodes. Our experience is often a collection of stories across our journey. We can and do describe our journey across silos, beyond the purely clinical encounters and across time -- sometimes decades.

Our experience has a rich narrative that exposes the nooks and crannies of the healthcare system in ways our colleagues, bound inside their silos do not experience. This information has value and is unique to the patient point of view. 

Like with our specific stories, the ultimate respect comes from the system changes that are driven out of our perspective.

Does our expertise inspire respect?

When we first share our story or experience, we often rely on our colleagues to sort out the wheat from the chaff. 

When we become more knowledgeable and more skilled, we can contribute our insights to our perspective. Our experiences form the basis of our insights. We also bring our life experiences - our work, our activities -- to inform how we understand and solve problems. Some of us have amazing expertise outside healthcare to offer. Many of us read and learn about the healthcare system and health issues. We listen to and seek out the experiences of our fellow patients. 

We aren't all able to analyze and talk about our experiences well. It is not automatic. This is often a new skill for us. We need to learn to harness our experiences in service of the work we do as advisors.

Our expertise is our ability to articulate our understanding of our experience of care and our observations of the healthcare system in the context of all we've learned. And this expertise varies from person to person.

In sharing our insights and ideas and having them judged on their merits, we hope to be respected as peers in the quest for better healthcare. 

The Challenges with Respect

It is hard to exhibit respect for our contributions when the expectations of us are not clear.

Most engagements do not specify what is expected from advisors. There are no clear cut expectations of us in terms of our capacities.

So the unstated expectations often clash with what we, as patient advisors, can contribute.  Are we to tell our story - which story and why? Are we to discuss our journey - does it map to the issues at stake? Are we to collaborate - does our expertise match the issue in content and depth? 

We are not all the same. It takes work and expertise to ensure the right person for a team or engagement. 

Not clarifying expectations and not troubling to get to know us well enough to make a good match -- these are all indications of lack of respect. 


It is hard to demonstrate respect when the need to control us and what we say dominates how we are engaged.

Just as we are not often sure what we can offer beyond retelling our story, so our colleagues are groping for how to use us as advisors. 

This uncertainty leads to some interesting ways of engaging us which runs the spectrum from...

• Using us to provide the appearance of engaging patients for communications purposes
• Framing the discussions so tightly we cannot say what we want or discuss what matters to us
• Ignoring us at meetings and hoping we don't actually speak
• Wanting us to only recount our story and now the patient will be quiet
• Fawning over us and making much over anything we say or do whether it's of merit or not just because we are health challenged
• Embracing us a colleagues with a different but valuable perspective

Using us as token patients, being insincere in dealing with us, controlling our input -- these are all marks of disrespect.  These may be genuine experiments in engaging patients but they come with a side effect of lack of respect.

Respect in Action

So how do actions translate to respect in my view?

As an advisor, I have been most respected when, for example ...

• My comments and ideas are discussed on their merits
• It is a matter of course that my obvious knowledge gaps are filled in so that I can contribute meaningfully
• I am introduced in the same way as the others are and not called out specially as exhibit A: the patient advisor
• Others counter my ideas without worrying about offending me
• My life experiences in work and elsewhere are known and considered an enriching bonus
• My expenses are covered even if my time may not be compensated
• I'm kept in the loop on relevant information like meeting changes

In short when I'm just one of the gang around the table working on an issue, I am respected as an equal.

And On the Other Side

Respect is a two-way street.  

We, as patient advisors, need to respect the expertise and deep knowledge of our healthcare colleagues.

There is a temptation to be self righteous about our experiences and any harms done to us. We don't know best but we do have much of value to contribute. If we are to work together for the common goal of improving healthcare one project, one policy, one change at a time, then we all need to feel respect for each other and consciously act in ways that demonstrate respect.  This starts with listening fully with an open mind and heart to each other.

Respectfully yours

Will any patient advisor do?

I've been wondering - are patient advisors interchangeable? 

Horrors, I hope not! 

Yet I feel we are largely seen as somewhat swappable. I say "somewhat" because Patient Engagement folks do seem to try and mix up the groups to represent diversity, an important factor to be sure. 

So, yes, we are all different because we are human but is there something else at play here that contributes to our differences? I think there is. There is a factor more directly related to the business of advising. 

I've come to the conclusion that there are different types of advisors and this matters.

Types of advisors

As I've come to know some of my fellow advisors, I have concluded that in terms of skills, attributes and experience related to the business of advising, we are not all the same.

As advisors, we sometimes assess our involvement and our experience of a group differently. I venture to suggest this is in part because we are different types of advisors. Sometimes it's like we weren't all at the same party.

Our healthcare partners don't often see our experience of involvement in the same way we do. Not only that, I sense they may make an assumption that all advisors experience the involvement in the same way. 

My hope is that understanding the different types of advisors will bring a new level of clarity to how we choose to interact and assess those interactions.

An Interested Advisor

This was me 5 years ago when I started. 

My patient experience was well digested. My caregiving experience was underway. I was interested in helping to improve the healthcare system and making sure no one went through some of the regrettable and downright awful experiences some of my friends and I had gone through. So I became involved in my local hospital and elsewhere.

I was asked to tell my "story" and relate it to the work at hand. I mostly listened to my expert colleagues and tried to understand and learn. Occasionally I would clear my throat and offer up my perspective on matters.

I felt privileged to be asked and grateful to be involved in this whole new world. 

I think most of us start in this way.

An Informed Advisor

This is me now, 5 years in with experience across a number of sectors. 

I have listened to many people tell their stories and I have sought out the experiences of others. I understand the world of patients and caregivers so much better than I did 5 years ago.

I now know roughly how healthcare is structured in my province. I know the acronyms - or at least the main ones. I not only know of many of the main organizations -- those that deliver services and those that support professions and other groups -- I even have collegial relationships across this group. 

I know about some of the systemic issues plaguing our system and I know that many struggle with these issues too.  My contributions are more robust as my understanding increases and my relationships deepen.

I am starting to feel more like an insider and fear losing touch with my perspective as a patient. At the same time, I feel energized by the deeper levels of my contributions. 

I think this is typical for those of us at this stage.

A Healthcare Professional (HCP) Advisor

This is not nor ever could be me but there are many HCP patient advisors. 

These are current or retired healthcare professionals of all sorts who have decided to become patient advisors often due to an unfortunate experience with the system.

They bring an added passion fuelled by what feels to me a sense of betrayal by the system they work in. And they have a deep understanding of the system and how care delivery works.

They bring a hybrid perspective as both insider and as a patient or caregiver. 

They can't uncouple their knowledge of healthcare, its systems, its culture and their professional relationships from their patient or caregiver experiences. So their perspective is valuable but different from either the Interested or Informed Advisor.

How do the types relate to each other?

There is an obvious "career" path starting with the Interested and going to the Informed Advisor for those that choose to deepen their commitment and are not HCPs. But that's where the path stops.

The HCP Advisor is different. They start out informed about the system and about other patient experiences, at least from the healthcare professional's point of view. 

Why Does It Matter?

I think that it does matter. It matters to us; it matters to our colleagues; it matters to the work we do.

Just as we pull together teams at work looking for a mix of experience and expertise, populating a team with advisors needs the same approach. One of the first attributes to consider, I suggest, is the types of advisors needed. 

So here are my initial thoughts on collaborating with different types of advisors.

Mixing It Up

Working Groups

On a working group, usually under 10 people with a mix of staff and 1-4 advisors, Interested Advisors can learn from the more experienced Informed Advisors who in turn can re-ground themselves in the new Interested Advisor's patient perspective. Combining these two types has a lot of benefit. 

The HCP advisor can bring a huge depth of knowledge to a working group. They are, however, not able to bring the outsider's perspective. Combining their point of view with that of new or more seasoned advisors who are not HCPs can round out the view points nicely.

Some issues to consider:  

1. Context as an enabler: If there are HCP Advisors as well as other advisors, the staff members of the group may assume that there is less need to ramp up the advisors because some exhibit greater knowledge. This can leave the Interested or Informed Advisor without the necessary context to jump in.
2. Missing the view point: On the other hand, if there are only HCP Advisors, the team does not hear about the impact of the work on patients who have no or little knowledge of the system. Some of our healthcare colleagues' assumptions may not get challenged as they should.
3. Going with the familiar: Our healthcare colleagues often feel most comfortable with the HCP Advisors because they are also insiders and there should be no surprises. This may bias the selection of advisors and who is listened to.

Focus Groups

Focus groups are an interesting challenge. I find they tend to limit feedback and risk missing some of the real nuggets of perception that can change the conversation -- but that's another topic. In general, these groups are a mix of advisors, some of them first time participants. They are facilitated either by staff or a professional facilitator. The mix of types of advisors offers up its own dynamic.

Some issues to consider:  

1. Self-editing: At times when HCP Advisors speak, I have felt that my comments just can't cut it in the face of such expertise. So I modify what I say or just keep quiet. I've learned from others privately that this is a mostly unacknowledged but real concern for fellow advisors. Many of us have self-edited in the face of the expertise of our HCP Advisor colleagues. 
2. Becoming a bully pulpit: These sessions can occasionally descend into forums for those with strong opinions who won't let go. This may come from a participant not yet well versed in collaboration and respectful dealings -- hopefully the hallmarks of any advisor. 

Councils and Panels

In most cases, councils and panels are charged with strategy, system level issues and generally the more abstract and/or complex work in healthcare. This tends to differ from focus groups which are usually around a single topic. Like the focus groups, these may be comprised of all types of advisors.

Some issues to consider:  

The same issues that relate to working groups and focus groups may also occur in councils and panels. The complexity of the work, however, offers some additional challenges.

1. It takes time to form as a team: As strangers from varied backgrounds, we need to find a way to work together for an often unclear mission. For our healthcare colleagues, this is different from creating a team from employees purposefully hired to fulfil the corporate mission. This takes time. The more experienced advisors understand and can support this.
2. More styles need to be accommodated:  Not everyone is experienced with analysis and abstraction. Some are more comfortable coming at issues from the narrative approach by relating their experiences around an issue. This approach absorbs more time and checking to see if the group is understanding the key points being described. Informed Advisors may have experience with accommodating styles and can help support the facilitator. 
3. What hat are you wearing: I have seen HCP Advisors slide back and forth from their HCP lens to their patient or caregiver lens especially when dealing with complex systemic issues. While this is valuable, it is helpful to know what lens they are using when making comments. If not, all their comments may be seen as from the patient perspective. Without clarification, this may distort the view of the patient experience as seen by Interested and Informed Advisors. 

Overall, it is important to recognize the types of advisors, the benefits of each and how to draw those out, the limitations of each and how to mitigate them and above all, how to make sure they can all comfortably speak up and respect each other. 

I welcome thoughts and comments as I am testing out these ideas. 

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Shouldn't Our Minister of Health Be Our "First Patient"?

How should the government "engage" patients? 

Yesterday on behalf of the Ministry, I and a number of my fellow seasoned patient advisors, explored this question. Great! Makes perfect sense, if you want to know how to engage patients, ask us.

Eric Hoskins, our Ontario Minister of Health, has recently put forth a discussion paper called "Patients First" suggesting structural changes designed to put patients and their needs at the centre of healthcare. And now he is asking us how to more directly involve patients in the system.

I am taking him up on his offer.

Three key questions

To start with, I asked myself:

• What would happen if the Minister could hear directly from the public and patients unfiltered by any middleman whose conceptual frame or vested interests might skew the message?

• How would that raise his profile and give him more power to make difficult changes?

• How might he easily collaborate directly with existing informed patient advisors to think outside the current healthcare box? 

I've been thinking a lot about how we, the public and patients, can work with the policy makers, practitioners, researchers and healthcare organizations. 

What grist went into my thinking?

Why think about this? Because I've been involved as a patient advisor for about 5 years - with a funding agency, my local hospital, with HQO (Health Quality Ontario), with AFHTO (Association of Family Health Teams of Ontario) and with other projects and organizations directly and as a Patients Canada referral. I've seen how involving patients can grow from toe-in-the-water engagement, through collaboration to true partnership as each side of the partnership gains experience and confidence.  I've shared the excitement when both partners pool their efforts and come up with outside-the-box solutions. 

And I'm not just on my own. There is a growing number of us who network informally, keep each other up-to-date, share experiences and constantly share ideas about how to improve our system.

How I see patient involvement with government conceptually

An unfiltered stream of 

patient ideas and partnership points

Now thoughts on how to get there

Why not start by leveraging what already exists in the councils and groups of patient advisors scattered throughout the system? This would be quick to do, not costly, and a very powerful way to connect directly with a wide range of us across the Province.

Let's throw out the old way of hearing our "input" filtered through all sorts of professionals who massage our messages into reports that we don't get to comment on. Let the vested professional interests keep their strongly established channels of communication with the Ministry. And let us have ours - unfiltered. Let us surprise you with our knowledge and our passion to have the best health system.

How might this work? Let me get practical.

Minister of Health as "First Patient"

Be a champion not just in word but in deed, Mr. Minister. 

Involve us. 

Become our First Patient.

Create a council of public and patients who are interested in participating in the ongoing development of health strategy and the setting of priorities for transforming the system into being truly "patients first."  The Council would report directly to the Minister and be supported by his proxy, the Deputy Minister. There are hospitals who have set up similar structures where the councils participate in decision-making and are not merely advisory bodies. These can be models to draw on.

The Council would need support in the way of coordination, facilitation, recruitment and member support. The support group would take direction from the Council, support their work and report to the Deputy Minister.

The Council members or others from the public could be embedded in all the working groups and policy initiatives in the Ministry according to the interests and aptitudes of the participants. The support group could enable this as well -- not unlike the patient engagement departments in the hospitals that partner with, not merely engage patients.

So that's for starters.

Companion Champions

Many of our 14 LHINs (Local Health Integration Networks) or health authorities already have community councils. Let's use them in a systematic way.

These regional councils could provide a two-way flow of discussion and debate with the Ministry Council particularly on policy and policy implementation issues. Think of the rich regional nuances that could be shared with the central Council and the Minister, our First Patient.

Championing the Ground Game

Why not use all the existing patient councils and panels currently found in the points of care organizations like hospitals, long term care facilities, some home care organizations and so on?

Each LHIN should, and probably does, know which of the institutions under their jurisdiction have involved patients. As they plan the implementation of new policies, practices and services, these groups can be vital allies in helping to get it right.  They are deeply connected within their communities and can spot opportunities to strengthen these ties to improve the patient journey across the silos. 

Patients Supporting the First Patient

Policy is all well and good but it needs to pass into reality.

With the complexity of competing interests, the best intentioned Ministers have struggled to implement change that is best for patients without being pulled off focus by powerful forces looking after their own interests. It has become a balancing act trading off among these interests -- while patients' interests often fall to the side.

• Imagine harnessing the patient perspective and drive for improvement to focus towards change that really does put patients first. 

• Imagine harvesting the practical, on-the-ground experience we advisors bring to implementing changes that indeed make the lives of patients and caregivers so much better.    

• Imagine healthcare providers working every day in an environment where they know they are supported by their patient partners because they are working together for improvement.

What a role the First Patient could play!  

What support we can offer him as the very people he serves!

Public Collaboration with the First Patient

Think of it. This could be a direct pipeline between the Minister and the public. This could give the Minister direct access to the ideas and experiences of those patients and caregivers collaborating with the front line to make health service delivery more patient centred.

This is totally doable. 

It builds on the groundswell of those of us already connected with the system and our partners who have already invited us in.  

All it takes is for our First Patient to make the first call.