Healthcare Navigation Glossary
Healthcare is a land of terminology. If you run across healthcare-speak that isn’t listed here, please fire me an email. I’ll build up the healthcare navigation glossary as we go along.
Complaint – Patients and essential care partners often find themselves on the wrong side of this term. It is used
when patients ‘complain’ of symptoms and when a patient or care partner registers a more formal ‘complaint’ about issues they encountered with their care. Thanks to an MD on Twitter, I am now using ‘highest priority concern’ for the former. I now use: Incident Report for the latter.
Elective Surgery – Any surgery that isn’t ’emergency surgery’ and is scheduled is ‘elective’. This DOESN’T mean the surgery is unnecessary or that you could ‘elect’ not to do it. Go figure.
Essential Care Partner – Any person who helps another person with their medical needs as a result of injury, illness or aging and who is usually unpaid. An essential care partner doesn’t have to be a family member and the kind of help they provide can range from helping occasionally to providing care for significant periods of time. Essential care partners are still too often unseen and unacknowledged by health and social services systems even though they are often required to access care. During COVID, we were deemed to be ‘visitors’ and denied access which can lead to issues of #PatientSafety.
Family Caregiver – Term commonly used to describe someone who is a family member or friend who helps another person with their medical/healthcare needs. The trouble with this term is that not everyone is a family member and it somewhat minimizes the essential nature of the care partner to the system that can’t function without them. During COVID, caregivers were frequently stripped away from the people they were there to help – often with negative consequences. See: Essential Care Partner.
Incident Report – Usually called a ‘complaint’. Patients and essential care partners can file incident reports about poor or unsafe care with hospital authorities, professional authorities or ombudspersons depending on the situation. I have been known to cross out
complaint and write in ‘incident report’ at the top of forms.
Marginalized – Language matters. We use the word ‘marginalized’ almost casually, glossing over the active nature of the word. We actively marginalize people in our culture and often don’t realize it. This happens in healthcare *frequently*. The ‘system’ functions as it functions and when you find yourself having to interact with it more often, you have to learn quickly how best to keep yourself from being ignored – especially if/when your issues are novel or rare. This adds to your #TreatmentBurden (see below).
Marginalized = intentionally ignored
Homeless = unhoused
Overdose = unsafe supply / drug toxicity
PWD/CPP = forced poverty
These are policy choices. I choose language that reflects that.
— Crystal Mundy (@crystalmundypsy) August 21, 2022
New Work – I first heard this term used by Dr. Victor Montori (author of Why We Revolt: The Patient Revolution for Careful and Kind Care) to refer to the list of tasks that patients and their care partners are now expected to perform. Often without really being told about them or getting and help or training in carrying them out.
PCR Test – See ‘Polymerase Chain Reaction Test’.
Polymerase Chain Reaction Test (PCR Test) – We use a PCR test when looking for DNA or RNA and so this is why it’s used to test for COVID. Viruses are not ‘alive’ in the strictest biological sense – they are chunks of either DNA or RNA that reproduce by infecting a living cell and hijacking the living cell’s biological processes to copy themselves. The Polymerase Chain Reaction works by repeatedly doubling the number of copies of DNA or RNA strands in a sample until there are enough for another test to detect. Because COVID is a single-stranded RNA virus, the type of PCR test used is a bit more complex than a standard PCR test. Here’s a short YouTube video explaining the basic PCR test as well as a link to an article that explains more about using Reverse-Transcriptase Polymerase Chain Reaction for COVID testing (https://www.iaea.org/newscenter/news/how-is-the-covid-19-virus-detected-using-real-time-rt-pcr).
Resilience – This is a loaded term that is often used to shift focus onto individuals who ‘aren’t coping’ rather than support people to better understand how the system works and to see it’s impact on the individual. Thanks to my participation in ‘School for Change Agents‘, I am now using ‘Resourcefulness‘.
Resourcefulness – Navigating our medical systems certainly requires ‘the ability to find quick and clever ways to overcome difficulties’ (thank you Google). Difficulties can arise frequently and we need to learn how to recognize the power and resources we have and how to use them. It’s not always easy or pretty!
Source Control – In epidemiology, this refers to stopping or controlling something (like SARS-CoV-2) at its source – before it gets into us and causes havoc. Aspects of source control for an airborne virus include: (i) mask wearing,(ii) rapid testing,(iii) isolating infectious people, (iv) monitoring air quality and (v) filtering the air we breathe. Check out this blog post.
Treatment Burden – The ‘workload’ of healthcare taken on by patients and their care partners. It can also refer to the impact that this work has on your everyday life.