Advocate and cancer patient Nicole Cooper says too often the 'system' forgets that its purpose is not 'consumers' but serving the needs of actual patients.
I live life as a patient and advocate in parallel. Sick one minute, and ‘sick of this’ the next, my days are punctuated by the translation of health philosophy into practice.
This was especially true last week - a morning spent observing a well-intentioned 'how to embed consumers in your medical research' webinar and an afternoon spent with chest pain and shortness of breath.
Could this be a blood clot? Once asked, this question needs an immediate answer.
Darting through evening traffic, scrutinising the Google map for time savings, and racing to the safety of hospital blood thinners, it was a stretch for me to contemplate myself as a consumer.
I didn’t particularly identify as a consumer as I lay half-naked on a hospital bed being jabbed and re-jabbed with needles, or while I was being wheeled to a CT scanning donut, or as a collection of furrowed brows, preoccupied eyes and N95 masks gathered around my bed.
I felt sick. I felt scared. I felt like a cancer patient.
Because I am one.
I am a patient. The effort required just to keep me alive, let alone treat my stage four bowel cancer, is seemingly endless and highly customised to meet the vast catalogue of Nicole Cooper-specific issues.
I have a singular patient experience. Plenty of stories to tell.
But I am also part of a collective. Patients. A vast and variable group, we are brought together by our shared proficiency in a health system that certainly can or would deliver on its purpose, but habitually can’t or won’t. We have an endless supply of lived experience in this reality. Just ask us.
And increasingly, our health system is. Academics. Care coordinators. Hospital administrators. Pharmaceutical companies. From all corners, there is a clear commitment to seeking feedback on the human experience of the health system with a view to making it better. But there is an accompanying fixation with categorising this experience under the term ‘consumer’.
Many patients do not like this term. Research has cleared this up. Some loathe it. And yet, it persists.
The justification for using it centres on a couple of arguments, generally made by people who are not patients. First, that ‘patients’ are passive recipients of care with zero autonomy, a static group subjected to a set of outmoded, paternalistic attitudes from health system participants. Consumers, on the other hand, are empowered decision-makers.
As a patient, I find it distressing, alarming and frankly inexplicable, that having identified a pretty lousy oversight in the patient experience, we stop short of acknowledging the urgent need for patients to be empowered decision-makers, and instead generate a new category of participants who is allowed to be.
As a professional female pinned to a pay grade that is a sizable notch lower than my male equivalent, I am not looking to be redefined and elevated to some glossy higher-order form of myself, recognised and worthy and finally welcomed. I just want to be me with equal pay.
The next argument for the consumer title is the 'every voice matters' chorus. That a patient is only one of many essential unheard voices that our health system needs to stop and listen to - we must also champion the carer, the support person, the survivor, the thriver. This argument fails to proceed to the logical conclusion that the nuanced experience of each participant in our healthcare system - particularly those who are not paid to participate – is complex, valuable and essential enough to also be understood in its own right.
But the purpose of this system, the point, the reason we are all here, is the patient.
Too often, health experts tell me that they truly came to understand why we need to listen to patients after they became one. Unfortunately, patients do not have time to wait for every doctor and researcher, professional and bureaucrat, to get sick.
Our health system has correctly identified the gaping hole where real-world experience should be, and is now asking for this detail, designing for it, occasionally paying for it, and increasingly valuing it. But we need to call it what it is - patient participation. Equal. Present.
It is impossible to conjure a health system that finally, collectively, starts to work towards patients as its purpose while that same system cannot even call patients by their real name.
So while it may not be trendy, popular or standard across the health system, please contemplate your own opportunity to acknowledge that patients even exist. Maybe then, we can start to make this system work for them.
Nicole Cooper
