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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