"What's in a name? That which we call a rose by any other name would smell as sweet"
William Shakespeare
Romeo and Juliet, Act II, Scene ii
There has been much discussion in and around patient-oriented research about what to call people like me. By people like me, I mean patients, families, and caregivers who contribute our expertise to research endeavours. Debate can get heated, with the primary two terms (at least in Canada), Patient Partner and PWLE (Person With Lived Experience) being the primary contenders.
What's my skin in the game? I've been in and around the research world for the past 17 years- first as a parent of a kid who has a rare disease, now, as a parent of 2 young adults with a variety of health problems and disability, as well as being a disabled person as well. I've been a part of, witnessed, and heard about patient partner experiences in that time that range from traumatizing and inequitable to respectful and deeply satisfying. Happily, the trend as been towards the latter instead of the former.
In more recent years, I've had the privilege in having roles advance what patient partnership can look like – letting the good and bad experiences that I, and others, have had shape partnership opportunities for others. Language and terminology are deeply important to me and I mull over how language can create clarity and lift our role in research teams.
I believe that language both reflects culture and influences it. In recent years, I have shifted my language to ‘patient partner/partnership’ over other terms for a variety of reasons. I think the term 'patient partner' compels readers and research teams to look at those of us whose expertise has been obtained outside of academia through our navigation of health and social systems. It’s a subtle shift, but an important one that works to place patient partnership expertise as different than, but equal too, that of the academics and clinicians we work with. This has been and continues to be an uphill battle, but a vital one.
‘Patient partner’ does more than emphasize the ‘partner’ part of the term. Research and healthcare are highly hierarchal systems where the non-academic (the patient) are the people with the least amount of privilege and power. We feel that lack of privilege deeply – even more so when intersectional identities further the gap. The following three example teams show how alternative language use could be perceived and used.
Team 1
Dr. Y is project lead
Drs. A & B are clinician researchers
Mary Sunshine is engaged as the PWLE (Person With Lived Experience)
In team 1, Mary sunshine has no ‘job’ (ie researcher, clinician) and is therefore relegated to a be very junior member of the team. In addition, her role will be usually referred to that of a ‘PWLE’ – a term that has no meaning outside of this role. By that I mean that if a non-academic observer would have no real idea what a PWLE was and the importance of that role.
Team 2
Dr. Y is project lead
Drs. A & B are clinician researchers
In team 2, while X, Y, A, and B are clearly people with status, as indicated by the title ‘Dr.’, Mary Sunshine has no such title and can be perceived as someone with less authority. However, the term ‘partner’ suggests a relationship that can approach the same authority as the other team members.
Team 3
Team 3 may be my favourite because it addresses the some of the inconsistencies in language, approach, and role. The language in Team 3 shows that if we were to be actually equitable in our language then the ‘Person With’ must be carried throughout the team members, where Drs. X, Y, A, and B are defined in the same manner as the ‘PWLE’.Physicians’ Perceptions Of People With Disability And Their Health CareMary Sunshine is engaged as the PWLE (Person With Lived Experience).
It is understandable to me that some patient partners have migrated to the term PWLE. By doing so, it erases the fact that we get our expertise from our navigation of the healthcare and social care systems. It erases the patient. Why is that important? The simple reason is that ‘patient’ is a stigmatized term, emphasizing the hierarchies that keep us at the bottom.
(For more on stigma in healthcare, see the links at the end of this post)
I often hear the patient partners ‘are more than 'just' patients. Putting aside the fact that the use of the word 'just' plainly shows how little respect patient expertise is given. Presumably it is needless to say that we are more than patients. However, it is patient/caregiver experience that is relevant to the work – not if we have a degree, a special job, or show prize poodles in our spare time. This goes for researchers as well – their role is to be the academics on the team. Their photography hobby or side-gig aren’t relevant to the research project.
I would never tell another patient partner how to define themselves, however, I think that it is important when we use language about patient-oriented research, we consider the impact of the words we use. Do those words push boundaries and elevate the role of the patient partner to that of an equal, or do they just entrench stigmas and attitudes that are not helpful? Each patient partner should have the freedom to identify with whatever label feels most appropriate to them. Bu I would encourage those who are writing in this space, as well as those creating partnership opportunities, to think about language and its ability to signal a real intent to partner.
