By Carolyn Canfield
When we are advisors in healthcare as patients and caregivers, it is assumed we bring our perspective to the table. But what is that perspective?
Doesn’t everyone have a different perspective on the healthcare system, given our unique histories and that of our families and friends?
Sure. But there is a fundamental difference if you are or have ALSO been a healthcare provider or insider in another aspect of the healthcare world. You understand a bit more of the context and language of this world. You are not viewing healthcare from the single lens perspective of a patient or caregiver only. You are seeing care through the dual lens of a patient or caregiver AND a healthcare professional or employee.
Here’s how I’ve experienced this as a single lens person.
The first time I joined a conference room table full of staff and senior management, I knew we shared a determination to improve patient safety. I think that’s all we shared, other than pulling on our trousers one leg at a time. I was very nervous walking in the hospital doors. This was a place of risk and, in my case, recent calamity.
Not My World
Okay, let’s say I had a “heighten state of awareness”. This certainly wasn’t my world. Quite frankly, it took all I could muster to find “the boardroom next to admin”. I knew where the ADMITTING was: the sign was a meter high on the hospital’s facade. I couldn’t even find the INFORMATION booth, once inside. I wasn’t processing visual information very well, but I really-really wanted to attend this meeting. Yes, I can!
My World, My Zone
If I had worked in healthcare, I’d have more than a clue at this point. Or at least the confidence to ask the right person for directions. I might also be able to read the signs with experiential knowledge.
Beyond some comfort in finding my way, I might also be informing myself about inevitable reorganizations, maybe connecting with former colleagues to learn the inside scoop on leadership changes and new organizational priorities. These insights contribute to strategic participation. Those insights are not available to me, coming from the outside with a single lens.
So after navigating a few dead ends to find the right place, everyone attending the meeting was very welcoming. I knew this was going to be interesting. But as each of us introduced ourselves, I had no idea what their words meant. Even now, every new title baffles me. I still trip over the nuances of what I thought I’d already learned.
What is a Clinical Resource Nurse? What is a Surgical Resident? Or a Surgical Attending? What is an Hospitalist? What is a Microbiology Manager? I could guess, but very likely wrongly. I had no idea what training this implied, how this person dealt with patients or related to their experience. I couldn’t tell which roles or perspectives that mattered to me might be missing at the table. My past experience as a patient didn’t prepare me for this.
And I was too shy as an outsider to ask.
Then the meeting started. Oh! The alphabet soup of acronyms! It was so comical, that I could not contain myself. I found my voice and asked for a pause for translation. The person running the meeting got the point. For the rest of that improvement project, never again did acronyms cause confusion. Staff members later thanked me, as sometimes they too had forgotten what an acronym meant.
Imagine if I were a former worker in healthcare. While I might be anxious entering a hospital or other health facility, there would be a degree of familiarity not confusion. The range of roles and responsibilities would be generally familiar, too. I would correctly assume differences in status, pay and authority, at least in general. Clinical settings would be meaningful, if not familiar.
With a background in healthcare I might be more bold. And I would be more comfortable asking for clarification of acronyms and unfamiliar job titles and functions. When you know the setting, you know how to behave and how to interact. I didn’t.
Both perspectives can be highly productive. How to spread better practice might come more naturally to a former worker in the setting. Truly disruptive questions and ideas might come from those who don’t know where the conventional limits lie.
An example of this is where the dual lens advisor has great ideas on better layout for a waiting room for better workflow that also respects patient needs — but the single lens advisor might ask why patients are waiting at all.
Both contributions are valuable. Both perspectives are necessary.
Outside the Frame
The single lens advisor asks questions without seeing that framework of roles and responsibilities, constraints of structure and funding, the strict culture and insider behaviour.
Patient Education Materials: Advisors are asked to develop or approve patient education materials. A former worker in healthcare might make assumptions about words that have different meanings to people inexperienced with the healthcare system. Those of us outside the healthcare world are closer to the same naiveté as the patients who will read and learn from the materials — or not!
Support for New Cancer Patients: A kind and empathetic cancer treatment centre wanted to support newly diagnosed patients by having the hospital chaplain accompany them to their case conference with the oncology team. They believed patients would appreciate having a person escort them with counselling expertise for those feeling fear, anxiety and stress. The single lens advisor rescued this disaster-in-the-making. They could see how patients might view a chaplain’s presence — to help them prepare for imminent death!
In the Know
A dual lens advisor can offer more specific comments and suggestions about the experience of patients with the system based on their added insight into healthcare relationships. But that informed perspective resides within the frame of structure and culture in our health systems.
Here’s an example where the “dual lens” advisor offers insight that my “single lens” would never guess.
Perioperative Patient Safety: I met with a patient safety team in a different province. As everyone introduced themselves, I recognized that two of the many nurse, manager, family council and technician attendees were physicians. What I could not see was the hidden hierarchy.
I didn’t distinguish between the physicians, just noted their presence.
As we talked, an inordinate amount of time was given to one of the physicians, the only man among fifteen other female participants. (I didn’t think this was such a terrific thing, but it wasn’t my meeting.)
Here is what had actually happened, I learned later.
This improvement group had succeeded for the very first time to get an operating theatre clinician-specialist to attend a meeting in person. (The other physician was involved in research on patient education, so not a clinician.) Everyone was all abuzz afterwards at how fabulous it was to have this anaesthetist at the table, actively engaged with suggestions and even taking on tasks. It was unprecedented.
Whoa! You mean this doesn’t happen every day?
Nope. I didn’t see the subtleties of status particularly between the physicians and staff.
What I found hugely gratifying however, was that my presence as a “patient advisor expert” from out of province had been the catalyst for calling this meeting and the impetus for this clinician to attend. As a result, there was remarkable change in collaboration and participation following this meeting. And my “single lens” didn’t see the dynamics of transformation at all.
Acculturation or Blurring the Lines
In time, of course, the single lens advisor gains experience. The acronyms make sense and the relationships among healthcare system components become clear. Our focus on the patient experience can become blurred especially as our relationships with healthcare professionals deepen.
In my own experience, I’ve found myself to be inappropriately defensive of a project that I saw from inception to full implementation. I no longer carried the questioning and challenging perspective of the outsider. I’m grateful to have stepped away to regain my “single lens” for the next project and the next setting. I help myself refocus by listening to and learning from experiences of other patients and caregivers.
There is much to be learned about being an effective advisor without losing our vital perspective. More on that in future as we share our ideas here in our PAN website.
Now It’s Your Turn
Advising isn’t easy, as everyone of you knows. Sharing insights from our patient and caregiver partnerships is a core aim of PAN. Join us. This is a place for generosity, where we can support each other with cautions and advice, information and connection. It is also a safe place to try out ideas about which we aren’t yet sure. Or ask questions that reveal our insecurities, vulnerabilities and self-doubt. Do you think I’m right about how I’ve interpreted my experiences? What have you seen in the single-double lens experience? You might have different ideas, questions and corrections. You certainly have different histories in advising. I welcome your comments and challenges wholeheartedly! Join us and join our member discussions.