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.)
 

Definitions

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 (patientadvisors.ca). (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

 Advisors

• 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.

STRUCTURE
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.  

PROCESS
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

http://wenger-trayner.com/introduction-to-communities-of-practice/

http://wenger-trayner.com/resources/what-is-a-community-of-practice/

http://www.nickols.us/CoPCharacteristics.htm


http://www.springer.com/us/book/9783319222332; chapter 2 Preserving Knowledge Through Community of Practice, Rocco Agrifoglio, 2015
 

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.

Bumps and boulders on the road for patients partnering with researchers

The first thing I learned when I was asked to be on a research team is that we don't make it easy for patients to be partners rather than subjects. These partnerships are new and now much demand but there are a lot of bumps and boulders.

That I overcame them was a great tribute to some very kind and persistent researchers. But relying on the kindness of researchers is not a systemic solution.

The known bumps

The studies on patient engagement in research identify a number of potential issues for patients or citizens partnering with researchers.  And I certainly encountered them. The main ones for me, are the following:

Learning the language:  Like in any industry, researchers have their own terms, acronyms and accepted turns of phrase. While there are lists of acronyms, in the end it just takes exposure and time. I thought I'd do up patient cheat sheet to be helpful to others. 

Learning the process of research: At a high level, this is not so strange for many of us from the corporate and other worlds. The main stages are: Applying for funds, planning, implementing, analyzing and KT (knowledge translation) otherwise known as  "getting the word out and hoping others pick up the ball."  All these stages have their own sub-elements which, again, takes time to figure out.   

Learning the role:  Like with any new venture, I had to figure out who's who and how I fit into the team. This is tricky as it seems to vary from team to team and partnering with patients is pretty new for all concerned. There is a certain amount of fumbling around by all parties until we are comfortable with each other. It is a combination of demonstrating my value to the team and my (hopefully) adequate people skills that helps me to settle into a team. 

As with anything new, there are those researchers who embrace the partnership, those who go along and those who are uncomfortable. Providing an orientation to help researchers become more comfortable with this new creature in their midst will go a long way to smoothing the road.

I had anticipated all of these bumps and was ready to work my way over them. What I didn't anticipate were the following unexpected boulders.

The unexpected boulders

The CCV: Imagine my surprise in finding my regular CV was not going to cut it for the funding application. This had served me well for years. Now I needed a research CV and was directed to provide my CIHR PIN number and CCV Confirmation number.  It took 8 rounds of emails with directions and questions and some extreme mental gymnastics to fit my life into the categories demanded by the online CCV system used by the research community. I know of colleagues who gave up on this.

So can the research world either let us submit our regular CVs or give us an easy online form that works for patient partners?

Certifications: There are rightly strong protocols to protect patients and their data and to conduct research in an ethical manner. The researchers are all up on this - or should be. To my surprise, because I would be working with the data, I was required to have up-to-date TCPS-2 (ethics) and ICH-GCP (Good Clinical Practices) certificates. So back to school for me. And I had to take these online certification courses which were fortunately free, if time-consuming.

So now I'm thinking, we need some serious preparation for patients and citizens who want to partner with research teams. At the very least, some up front warning would be helpful.

Some questions

How will we attract a diverse range and number of patients and citizens to participate as partners in research with the demands for specialized CVs and the need to train and get certifications?  Is it even realistic to expect any but the tenacious and well educated to want to partner with researchers?

The known challenges can be overcome with determination and time but these other obstacles are possible show stoppers. If we are to be serious about involving patients as partners in research, how can we smooth their way?