Friday, 5 January 2018

Getting to Patient Engagement 2.0: The Role of Communities of Practice and What’s Missing

The desire of healthcare organizations to stand up their own communities of practice (CoP) for patient engagement (PE) is the next big thing in the patient engagement movement, as I am experiencing it.  I have been wondering why.

So I’ve been thinking:
What is a CoP exactly?
- And what are people trying to solve with a CoP?
What is the patient engagement practice?
- And whose practice is it?
How can we evolve patient engagement to PE 2.0?
- What is the CoP role in this evolution?
- What is missing in order to move PE forward?

Thoughtful Patient Engagement Professionals and experienced patient/caregiver leaders, are telling me they want to move patient engagement to the next level -- Patient Engagement 2.0, if you will. I think this may, in part, be driving the interest in CoPs.

I thought I’d do some modest research and put down my thinking on these questions.  

Communities of practice: what and why?

Community of practice is a relatively recent term though the concept has existed for a long time. Jean Lave and Etienne Wenger did the work to name and describe CoPs some decades ago. These two are the go-to people on CoPs. Their work is the basis for much of the material on this topic. (See references at the end.)


A community of practice (CoP) is a group of people who share a craft or a profession. Wikipedia
A community of practice is a group of people who share a concern or a passion for something they do, and learn how to do it better as they interact regularly. Etienne and Beverly Wenger-Trayner, 2011
Etienne and Beverly Wenger-Trayner on CoP elaborated on the earlier work of Jean Lave and Etienne Wenger during the 90’s.

Breakdown of a CoP

The Wenger-Trayners maintain that three domains form the critical components to a CoP.
The domain: “Membership … implies … therefore a shared competence that distinguishes members from other people. …They value their collective competence and learn from each other, even though few people outside the group may value or even recognize their expertise.”

The community: Members may work alone but “they engage in joint activities, discussions and learn and share information.”  “They build relationships that enable them to learn from each other.”

The practice:  “Members of a community of practice are practitioners. They develop a shared repertoire of resources: experiences, stories, tools, ways of addressing recurring problems—in short a shared practice.”
They note that CoPs sometimes go by other names like learning networks or thematic groups and characterize a CoP as a social learning model. Practitioners are seeking peer-to-peer connections and bi-directional learning opportunities with or without the support of institutions.

A note on success factors for CoPs 

Not all CoPs are successful so I think it is worth noting what contributes to their success as these are key factors for a CoP. The Wenger-Trayners go on to list three key success factors plus others that lead to a thriving committee.
Identification: Communities of practice thrive on social energy, which both derives from and creates identification.

Leadership: A key success factor is the dedication and skill of people who take the initiative to nurture the community.

Time: Time is a challenge for most communities, whose members have to handle competing priorities.
Other key success factors include: self-governance, a sense of ownership, the level of trust, recognition for contributions, high expectations for value creation, organizational voice, connection to a broader field, interactions with other communities.

Conclusions about CoPs

From reviewing this material, I concluded that a CoP is a peer learning community for individual practitioners that most often is independent of any single organization.  Its purpose is to provide the learning and connections that come from shared experiences with those doing the same work.

Especially in the world of patient engagement, it makes sense that a CoP is both independent of any healthcare organization doing patient engagement and reaches out to the practitioners across organizations. 

This raises the issue of “practice”.

What is the patient engagement practice?

What is a practice?

I thought; why not look at the dictionary definition for “practice.” 

Merriam-Webster has the following pertinent definitions:
•    to be professionally engaged in
•    to pursue a profession actively
•    to perform or work at repeatedly so as to become proficient

If we keep that in mind, and look at the world of patient engagement, we find that there are three players each with their own practices. 

I’ve been thinking about the three players and what they do – what their practice actually is. So below is my take on the practices of the three groups.

The world of patient engagement

In the world of patient engagement, let’s understand who is involved, the work they do and how they relate to each other. This is key because each group’s work is its practice.

The patient engagement world is the intersection of the three players involved each of whom plays a different role and has a different practice. 
  • Patient and Family Advisors (PFAs) volunteer or are paid a modest honorarium to engage with healthcare professionals, on advisory councils, work groups, policy committees, education teams and research teams, and as speakers among other activities.
  • Patient Engagement Professionals (PEPs) perform a specialized version of the Human Resources role where PFAs as non-employees are not subject to the same controls and expectations of performance as employees. PEPs provide the glue, governance and guidance to the engaging of advisors.
  • The Health Care Professionals (HCPs) are staff of the organization who come together sometimes with professional colleagues from other organizations to do a piece of work in collaboration with PFAs.
Health researchers can be considered in this category, but engagement with research has a somewhat different approach and will be the subject of a different blog.

I would argue that a group that includes PEPs and PFAs is not a CoP since there is not one practice but two very different ones as I describe next.  There is however, a good argument for a CoP for PEPs and another CoP for Advisors
. More on that later.

I doubt that the HCPs need a CoP for how they work with advisors. Any acculturation to patient engagement for them is usually handled through training and orientation by the PEPs.

The patient engagement professionals’ practice

The PEPs are hired to perform a modified human resources function and to advance patient engagement within their organization. Their work, issues and concerns – their practice – relates to these tasks.
  • Regarding advisors, PEPs develop and perform the processes to find, train and bring on board pools of PFAs or advisors for councils
  • Regarding the staff, PEPs orient healthcare professionals on staff to PE, fulfill requests for advisors and provide support for the engagement
  • Regarding the corporation, PEPs evaluate and report, and develop strategies for patient engagement
They can and should get help in their practice from other PEPs who understand the work and the issues.  Currently in Canada I am only aware of the National Health Engagement Network (NHEN), an informal group of PEPs which has been meeting monthly by phone. Arguably there a real lack of a formal CoP for the practice of patient engagement.

The advisors’ practice

As advisors, we focus on doing the work we are engaged to do. There are no credentials to date for PFAs.  As much as we can, we look to each other for guidance on how to be an effective advisor.  

So what forms our practice?
  • Doing the work of our engagement:  This involves understanding the topic of the work and its context, our role as advisors, and how to use our experience to further the work of the group.
  • Adapting to Culture: We work collaboratively within a “foreign” culture, a strange system and with impressive and perhaps intimidating colleagues.
  • Dealing with the Practicals: We need to know how to create presentations and deliver them, deal with conference and meeting technologies, handle fatigue and other health concerns while advising, manage expenses and compensation.
  • Dealing with Issues:  We need to learn how to deal with tokenism, self-editing, responding to requests for our patient story, handling compensation, making and keeping commitments, expressing unpopular truths in a helpful way.
This is our practice.

When we sit at the table with our colleagues, we desire to do a good job of advising. We don’t want to waste our time or their time. 

Currently in Canada there is the Patient Advisors Network (PAN) which is an independent community of practice for Canadian advisors ( (Full disclosure, I am a founding member.) 

PAN is not tied to any one organization or any one type of advisor.  Many advisors do their work across sites of care and levels of the healthcare system. A number of us cross jurisdictions, particularly in research.  It is also provides a community for us especially for those who are isolated from others doing this work. It is a learning community.

Conclusions about practices in the context of CoPs

The “practice of advising” is in no way the same as the practice of PEPs. If the role and value of the CoP is as a peer learning community, it makes sense to have separate CoPs for PEPs and for PFAs.  In fact, there are existing national communities of practice for advisors – PAN – and for PEPs – NHEN (see illustration below).  

These communities need to be strengthened and supported. 

I see some issues regarding the move among a number of organizations to create their own CoP for patient engagement, as illustrated below:
  • There is a mix of practices (PEP practice and advisor practice) being considered which negates the idea of a community of practice
  • The value of learning from other practitioners outside the organization is lost
  • Advisors may be asked to join multiple CoPs diluting their participation in any one CoP

I wonder if some organizations see the need to mature the practice of PE in their organization and have embraced the concept of a CoP in order to do this.  But is the CoP fit for that purpose?  If not, how do we mature engagement?

How do we evolve to Patient Engagement 2.0?

So now let’s go on to the larger question of patient engagement itself.

I won’t go into details about what 2.0 might be in this blog, but will take a stab at what I think we need in order to evolve patient engagement.

Assessing where we are now 

Let’s start with where we are now and why.

Why are we engaging patients and caregivers?
First, let’s take a step back and confirm that most of us believe that patient engagement contributes to improving the patient experience and patient outcomes of health and well-being.  Most of us believe that we all need to work together to improve our healthcare systems. This is, after all, why we are either engaged as advisors, engaging advisors, managing the engagement or making engagement a policy priority. 

I do recognize that there is little concrete research on the impact of patient engagement. Hopefully that will follow on shortly and help guide where PE 2.0 can be most effective and how.   PE 1.0 is uneven and we don’t know much about what works and what doesn’t beyond the anecdotal.  We need research to step up quickly and give us some good, hard data with which to plan.  

Where are we with Patient Engagement 1.0?
Where are we with patient engagement in Canada at this point in time? Let me start by briefly describing what I see as the current state of engagement or PE 1.0.

The system -- engagement exists or is starting up with --

  • Rosters of Patient and Family Advisors (PFAs) in hospitals and other healthcare delivery organizations
  • Advisory Councils in long term care organizations, mental health organizations, health authorities, professional associations and some others
  • Patient advisors in the education of healthcare professionals in some cases
  • Advisors on policy working groups on an ad hoc basis
  • Patient partners on research teams required by many health research funding agencies like CIHR with its SPOR initiative
  • Advisors are bound to the organization inviting them in; therefore the advisor "community" replicates the silos in healthcare
  • PFAs on a roster often don’t know each other since their relationship is with the organization and not their peers
  • The value of experience (sometimes termed "professional patients") is being debated
  • There is a desire for diversity but difficulty finding and accommodating different voices 
  • There is no formal advisor training similar to the training for board members, with some exceptions in the research world

PE professionals
  • PEPs come from a variety of backgrounds and may not have formal engagement education
  • The PE profession is still forming and has yet to develop clear outlines, variations and career paths

Health care professionals and policy makers

  • HCPs are often not clear on what patient engagement is or its value
  • It is early in the culture shift to working collaboratively with advisors
  • Policy makers across Canada are just beginning to awaken to PE 
While BC has had the Patient Voices Network since 2009, it has remained much the same since it was created by the BC government.
More recently, Ontario has boldly embedded a Ministry Patient and Family Advisory Council in legislation Oct 2016 and is working to make engagement fully part of healthcare in Ontario.

Where to next?

So if that is where we are, then how do we determine where to go next?  How do we describe and implement Patient Engagement 2.0?  And who are the parties to do this?

I think this is what we need to lay the groundwork for 2.0.

  • An increase in skills most specifically for the PEPs and the PFAs.  
There is also a separate need to address culture and some of the practical aspects of PE for the HCPs.
  • A vision for PE 2.0.
We need an implementation plan with priorities for how to get there. 
  • A process and structures for moving patient engagement forward.
These should be ongoing to sustain the evolution of engagement.
  • People to drive the development of Patient Engagement 2.0

Increasing skills and the role of the CoP
Communities of Practice (or learning communities) for PEPs and for PFAs have a place in augmenting any formal training. Again, note that their practices are different from each other so different CoPs are needed for each.  

Arguably, the healthcare professionals don’t need a community of practice so much as they need training and guidance from the PEPs.  

This is not to say we can’t all learn from each other and work together to mature the world of patient engagement.  I am questioning how we do this effectively.

Thoughts on a vision for Patient Engagement 2.0
Patient engagement needs to become a system-wide responsibility supported by legislation so that it is not subject to the vagaries of political change.  These changes would naturally fall to the provinces and territories but the federal government would also have a role.

Given that, I am offering the following attribute examples that might distinguish PE 2.0 to start the discussion:
  • Formal legislated creation or mandating of patient and family advisor groups throughout the ministry, health authorities and care organizations at the provincial/territorial level
  • Federal support for national patient and family advisor organizations in the form of a sustainable, multi-year budgets and other supports
  • Federal/Provincial support for a national CoP for PEPs
  • Formation of a recognized professional curriculum and designation for PEPs
  • Connections among existing and future advisory councils and PFA groups with support from government and from the hosting organizations
  • Incorporation of the role of advisors in all training for healthcare professionals and policy people
  • Incorporation of the role of advisors in all health policy work at any level
  • ·         Guidelines for advisor compensation with compensation coming from a central source so as to maintain advisor independence of the hosting organization (Quebec is doing this in some cases)
    Interestingly, Ontario is already moving along this path and pioneering the future.

The missing structure and process for developing PE 2.0:
If we are to move to PE 2.0, the greatest opportunities rest at the provincial/territorial level.  

Although Ontario is leading by embedding patient engagement in the Ministry and the Province through the Patients First legislation, the goal should be to mature and grow patient engagement throughout Canada. 
All provinces, territories and the Health Canada provide health services, so all jurisdictions need to be part of the evolution.

The structure for this is not a CoP; it is a
missing structure and has as yet to be defined which I will attempt below. It should allow for PEPs and advisors to work together with healthcare professionals and policy makers.  

The structure should probably reflect the reality of the Canadian system with PE working groups for each jurisdiction. It might be useful to have representation from each of our 13 health jurisdictions PE working groups plus Health Canada come together to share on an annual basis. 

This might parallel the Health Ministers meetings or indeed become a part of them. Think of how this might impact health care across Canada! What provincial health minister would want to be a laggard on PE in front of their peers?  We should encourage each jurisdiction to move from where they are to their next step in growing patient engagement.

In Ontario, a number of advisor leaders and patient engagement professionals are thinking of gathering to brainstorm. We will be experimenting with the structure and process of a jurisdictional PE working group.  


As a start to the PE working group process below, I think we should start with advisors and PEPs meeting separately and then coming together to share. We will have to create the next steps as we go along as this is new territory.

Brainstorming:  Let’s start with developing a vision coming from experienced thinking. 

Advisor Meeting: Let's pull together key advisor leaders and add some advisors from other jurisdictions for outside perspectives. Let's be sure to take the time we need.  Since advisors come from many backgrounds outside healthcare, and since we have often a system-wide view, our ideas will reflect that.

PEP Meeting: Concurrently, the key PEP leaders could do the same exercise.  Their unique value is the in-depth knowledge of the system and its internal issues and opportunities so their ideas will reflect this.

Outlining the Vision and Setting the Agenda:
For the next step, the two groups (Advisors and PEPs) should come together to hammer out a vision of what we think PE 2.0 will look like and how to get there.  As we think about implementation, we will need to factor in other groups by creating Advisory Councils for healthcare professionals and for policy makers. 

I do believe that whatever we come up with and agree on will need to be socialized widely and reality tested.  

I am concerned that entrenched ways of thinking and doing might inhibit what we achieve.  We will need support from the highest level to push past unnecessarily resistant ideas. As with most things, it takes leadership from the top.  And for that, in Ontario, we have the support and leadership of the Ministry.

Who are the people to take patient engagement forward?

As to the “who”, while it ultimately affects all aspects of the health system and especially the Ministry, the two most experienced, motivated and interested groups are patient/caregiver advisor leaders and thoughtful, experienced PEP leaders. 

This is the place to start. This is who should lead the way forward.

Coming to the beginning

Yes, we do need communities of practice but let’s be clear whose practice the CoP addresses and what a CoP is best designed to achieve. Let’s understand how CoPs fit into the landscape of healthcare and the evolution of patient engagement. Let's figure out how best to support them.

The practice of advising needs attention and nurturing. This can and is being done in part through PAN, as a CoP, but there is so much more to be done.  Patient engagement professionals likewise need support, training and clarity. CoPs for each practice can play a significant role in increasing the skills needed as we move to PE 2.0.

Above all, I do think that the time is now and the opportunity is here to define PE 2.0.  I sense a hunger to move patient engagement forward and a desire to mature it so that it can start to realize its full potential to contributing to the improvement of the patient experience and patient health and wellness outcomes.  

After all, that is why most of us became engaged in the first place.

PDF version

References; chapter 2 Preserving Knowledge Through Community of Practice, Rocco Agrifoglio, 2015

Saturday, 16 July 2016

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 perspectiveOur 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

Thursday, 14 April 2016

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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