Navigating the health-care system is not easy, but you’re not alone.
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Hello, dear reader!
This is my first column for Healthy Debate as a Patient Navigator. This column will be devoted to providing patients with information to help them through their journey with the health-care system and answering your questions.
Here’s a bit about me: I have been a patient partner at The Ottawa Hospital and Ottawa Hospital Research Institute since 2017, and have joined a variety of governance boards that work on patient and caregiver engagement such as the Patient Advisors Network, the Ontario Health East Region Patient and Family Advisory Council and the Equity in Health Systems Lab.
My journey as a patient partner started much before 2017 though. When I was a teenager, I was diagnosed with a cholesteatoma, a rare and chronic disease that causes the development of fatty tumors in the middle ear. I have had multiple surgeries to try to fix it but will need regular follow-ups to monitor whether the tumor returns. Because of this, I also live with an invisible disability since I have essentially become functionally deaf in one ear and often rely on a hearing aid when I navigate the world.
Having undergone three surgeries in my adolescent years, it was my experience undergoing surgery for an acute hand and wrist injury following a jet ski accident as an adult that was the catalyst for my decision to become a patient partner. There was an intriguing contrast between how I was cared for at two different health-care institutions, my age being the deciding factor at which hospital I went to (a children’s hospital or an adult one).
The most memorable example was how, as a teenager or child, you were never left alone before surgery, and nurses and staff took all the time necessary to comfort me and answer my (and my family’s) questions. I also remember how right before putting me to sleep, the whole staff initiated a surgical pause and introduced themselves and explained to me what their role was during my surgery.
None of that happened as an adult. I was left in a hallway while the operating theater was prepared, anxious and alone with staff walking by not even batting an eye. My questions felt like an annoyance to the care team; as soon as I was wheeled onto the operating room table, the anesthetist quickly put me to sleep. I didn’t even have the time to see who else was there.
Now don’t get me wrong: I am incredibly appreciative with the quality of care I received, but it was the everyday interactions with the care teams that I felt could be improved. And so, while I was recovering from that surgery, I looked for a way to help other patients and the hospital improve its care. I discovered the hospital’s patient engagement program, applied, and the rest is history!
Since then, I have worked on a host of patient-centered policy and research projects and fervently advocate that surgical teams adopt a more compassionate approach with patients before and after surgery.
I’d be happy to talk a bit more about my journey if you ask, but with that out of the way … Welcome to our first patient navigator column about patient engagement.
Conceptualizing the continuum of Patient Engagement
In the context of Canadian health care, patient engagement is a multifaceted concept that involves active collaboration between patients, caregivers, health-care providers and researchers. It involves patients and caregivers as active contributors in decision-making processes, health-care services and medical research. Though the concept is not new, the paradigm shift toward patient engagement in Canada started around 2010.
I like to conceptualize the different levels of patient engagement as a measure of the strength of the relationship between patients and their interlocutors – whether it’s a healthcare provider, administrator or researcher – charted against the duration of the engagement or the scope of input required from the patient.
Defining different levels of Patient Engagement
Following the continuum, let’s begin by defining different levels of patient engagement. Bear in mind that these definitions can vary from one organization to another but are useful in generally labelling the level of patient engagement a project has achieved (or wishes to achieve).
Patient involvement: If the strength of the relationship between patients and their interlocutors is minimal and not time consuming or too onerous, then perhaps it can be categorized as patient involvement. This applies to many instances of transactional engagement.
Patient advisory/consulting: Right in the middle of our continuum, patients can find themselves engaging in patient advisory or consulting work, where projects are limited in scope and duration or complexity, and the relationship is not as profound as a partnership.
Patient partnership: The stronger the relationship is between the patient and their interlocutor, and the longer the engagement activity lasts or how much input the patient is providing, the more this situation can be categorized as patient partnership. It is the inverse of patient involvement.
Examples of the different levels of Patient Engagement
Let’s pretend you are accompanying a loved one to an appointment to manage a kidney disease, requiring them to undergo dialysis treatment. We’ll use this scenario to exemplify what label could be used to describe the level of engagement.
Patient involvement: In our case, if your loved one – or you – fills out a satisfaction or feedback survey about your experience in the waiting room and all that needed to be done was to hand it back to the clerk or care team, then, at a basic level, you could likely label this interaction as a form of patient involvement. It can also involve open consultations around a design of a new look and feel for a hospital, or the understandability of a survey or communications product. Interactions with the care team, administrators or researchers are minimal and often transactional.
Patient advisory/consulting: If your loved one was asked for more detailed information about survey results over the course of a few meetings, this could represent patient advisory/consulting. This could mean that patients meet with program administrators and care providers and share their insights on how things can be improved. It essentially involves patients providing advice to health-care institutions from the perspective of patients, their family members and caregivers.
Patient advisors or consultants are often appointed by hospitals or academic institutions to offer insights at multiple stages of health-care delivery and research. They can help pilot an initiative based on that feedback or evaluate whether the new solutions are working. Often patient advisors are engaged in smaller-term individual projects and meet with the project team as regularly as required.
Patient partnership: Going above and beyond patient advisory, if patients have built a trusting relationship with their care team or administrators, they could feel comfortable enough to partner with them and initiate a project of their own. This could be for a project in which they study a different form of treatment to improve patient-centered outcomes (like the time it takes to feel “normal” following a session); it could be working together to identify and remove barriers for other patients that need to access that type of care. These projects are not fulfilled overnight, but require a collaborative, longstanding and trusting relationship between patients and health-care providers, administrators or researchers. It ensures that patients, regardless of severity or chronicity of their illness, can meaningfully contribute their experiences to aid in improving patient care, or develop or implement policies, pilots or research projects from start to finish.
It is leveraging that lived and living experience to its full extent and having the patient partner involved as an equal voice in the decision-making process for a project – over many months, usually – that the engagement could be labeled a partnership.
Last words
The point of this column will be to answer or explore issues or questions related to patient engagement, health communications or even provide some thoughts on how to handle a particular situation.
I would be happy to collect your questions and feedback at any time, which will help inform future columns. Just email me at max@le-co.ca or connect with me on social media (Linked In, X / Twitter).
It’s not easy to navigate our health-care systems, but you are not alone.
This article is republished from healthydebate under a Creative Commons license. Read the original article.
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Eyes for Alzheimer’s Diagnosis: New?
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It’s Q&A Time!
This is the bit whereby each week, we respond to subscriber questions/requests/etc
Have something you’d like to ask us, or ask us to look into? Hit reply to any of our emails, or use the feedback widget at the bottom, and a Real Human™ will be glad to read it!
Q: As I am a retired nurse, I am always interested in new medical technology and new ways of diagnosing. I have recently heard of using the eyes to diagnose Alzheimer’s. When I did some research I didn’t find too much. I am thinking the information may be too new or I wasn’t on the right sites.
(this is in response to last week’s piece on lutein, eyes, and brain health)
We’d readily bet that the diagnostic criteria has to do with recording low levels of lutein in the eye (discernible by a visual examination of macular pigment optical density), and relying on the correlation between this and incidence of Alzheimer’s, but we’ve not seen it as a hard diagnostic tool as yet either—we’ll do some digging and let you know what we find! In the meantime, we note that the Journal of Alzheimer’s Disease (which may be of interest to you, if you’re not already subscribed) is onto this:
See also:
- Journal of Alzheimer’s Disease (mixture of free and paid content)
- Journal of Alzheimer’s Disease Reports (open access—all content is free)
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Food for Thought – by Lorraine Perretta
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What are “brain foods”? If you think for a moment, you can probably list a few. What this book does is better.
As well as providing the promised 50 recipes (which themselves are varied, good, and easy), Perretta explains the science of very many brain-healthy ingredients. Not just that, but also the science of a lot of brain-unhealthy ingredients. In the latter case, probably things you already knew to stay away from, but still, it’s a good reminder of one more reason why.
Nor does she merely sort things into brain-healthy (or brain-unhealthy, or brain-neutral), but rather she gives lists of “this for memory” and “this against depression” and “this for cognition” and “this against stress” and so forth.
Perhaps the greatest value of this book is in that; her clear explanations with science that’s simplified but not dumbed down. The recipes are definitely great too, though!
Bottom line: if you’d like to eat more for brain health, this book will give you many ways of doing so
Click here to check out Food for Thought, and upgrade your recipes!
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Shoe Wear Patterns: What They Mean, Why It Matters, & How To Fix It
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If you look under your shoes, do you notice how the tread is worn more in some places than others? Specific patterns of shoe wear correspond to how our body applies force, weight, and rotational movement. This reveals how we move, and uneven wear can indicate problematic movement dynamics.
The clues in your shoes
Common shoe wear patterns include:
- Diagonal wear on the outside of the heel: caused by foot angle, leg position, and instability, leading to joint stress.
- Rotational wear at specific points: due to internal or external rotation, often originating from the hip, pelvis, or torso.
- Wear above the big toe: caused by excessive toe lifting, often associated with a “lighter” or kicking leg.
Fixing movement issues to prevent wear involves correcting posture, improving balance, and adjusting how the legs land during walking/running.
Key fixes include:
- Aligning the center of gravity properly to prevent leg overcompensation.
- Ensuring feet land under the hips and not far in front.
- Stabilizing the torso to avoid unnecessary rotation.
- Engaging the glutes effectively to reduce hip flexor dominance and improve leg mechanics.
- Maintaining even weight distribution on both legs to prevent excessive lifting or twisting.
Posture and walking mechanics are vital to reducing uneven wear, but meaningful, lasting change takes time and focused effort, to build new habits.
For more on all this plus visual demonstrations, enjoy:
Click Here If The Embedded Video Doesn’t Load Automatically!
Want to learn more?
You might also like to read:
Steps For Keeping Your Feet A Healthy Foundation
Take care!
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Eat Better, Feel Better – by Giada de Laurentis
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In yesterday’s edition of 10almonds, we reviewed Dr. Aujla’s “The Doctor’s Kitchen“; today we’re reviewing a different book about healing through food—in this case, with a special focus on maintaining energy and good health as we get older.
De Laurentis may not be a medical doctor, but she is a TV chef, and not only holds a lot of influence, but also has access to a lot of celebrity doctors and such; that’s reflected a lot in her style and approach here.
The recipes are clear and easy to follow; well-illustrated and nicely laid-out.
This cookbook’s style is less “enjoy this hearty dish of rice and beans with these herbs and spices” and more “you can serve your steak salad with white beans and sweet shallot dressing on a bed of organic quinoa if you haven’t already had your day’s serving of grains, of course”.
It’s a little fancier, in short, and more focused on what to cut out, than what to include. On account of that, this could make it a good contrast to yesterday’s book, which had the opposite focus.
She also recommends assorted adjuvant practices; some that are evidence-based, like intermittent fasting and meditation, and some that are not, like extreme detox-dieting, and acupuncture (which has no bearing on gut health).
Bottom line: if you like the idea of eating for good health, and prefer a touch of celebrity lifestyle to your meals, this one’s a good book for you.
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Non-Alcohol Mouthwash vs Alcohol Mouthwash – Which is Healthier?
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Our Verdict
When comparing non-alcohol mouthwash to alcohol mouthwash, we picked the alcohol.
Why?
Note: this is a contingent choice and is applicable to most, but not all, people.
In short, there has been some concern about alcohol mouthwashes increasing cancer risk, but research has shown this is only the case if you already have an increased risk of oral cancer (for example if you smoke, and/or have had an oral cancer before).
For those for whom this is not the case (for example, if you don’t smoke, and/or have no such cancer history), then best science currently shows that alcohol mouthwash does not cause any increased risk.
What about non-alcohol mouthwashes? Well, they have a different problem; they usually use chlorine-based chemicals like chlorhexidine or cetylpyridinium chloride, which are (exactly as the label promises) exceptionally good at killing oral bacteria.
(They’d kill us too, at higher doses, hence: swill and spit)
Unfortunately, much like the rest of our body, our mouth is supposed to have bacteria there and bad things happen when it doesn’t. In the case of our oral microbiome, cleaning it with such powerful antibacterial agents can kill our “good” bacteria along with the bad, which lowers the pH of our saliva (that’s bad; it means it is more acidic), and thus indirectly erodes tooth enamel.
You can read more about the science of all of the above (with references), here:
Toothpastes & Mouthwashes: Which Help And Which Harm?
Summary:
For most people, alcohol mouthwashes are a good way to avoid the damage that can be done by chlorhexidine in non-alcohol mouthwashes.
Here are some examples, but there will be plenty in your local supermarket:
Non-Alcohol, by Colgate | Alcohol, by Listerine
If you have had oral cancer, or if you smoke, then you may want to seek a third alternative (and also, please, stop smoking if you can).
Or, really, most people could probably skip mouthwashes, if you’ve good oral care already by other means. See also:
Toothpastes & Mouthwashes: Which Help And Which Harm?
(yes, it’s the same link as before, but we’re now drawing your attention to the fact it has information about toothpastes too)
If you do want other options though, might want to check out:
Less Common Oral Hygiene Options ← miswak sticks are especially effective
Take care!
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Nasal Hair; How Far To Go?
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t’s Q&A Day at 10almonds!
Have a question or a request? You can always hit “reply” to any of our emails, or use the feedback widget at the bottom!
In cases where we’ve already covered something, we might link to what we wrote before, but will always be happy to revisit any of our topics again in the future too—there’s always more to say!
As ever: if the question/request can be answered briefly, we’ll do it here in our Q&A Thursday edition. If not, we’ll make a main feature of it shortly afterwards!
So, no question/request too big or small
❝As a man in his sixties I find I need to trim my nasal hair quite frequently, otherwise it sticks out in an unsightly manner. But I’m never sure how severely I should cut the hairs back, or even how best to do it. Please advise.❞
As you might know, those hairs are really important for our health, so let’s start by mentioning that yes, trimming is the way, not plucking!
In an ideal world, we’d not trim them further back than the entrance to our nostrils, but given the constant nature of hair-growing, that could become a Sisyphean task.
A good compromise, if you’re not up for trimming when you get up and having visible hairs by evening, is to put the scissors away (if you haven’t already) and use a nasal hair trimmer; these are good at a) trimming nasal hairs b) abstaining from trimming them too far back.
By all means shop around, but here’s an example product on Amazon, for your convenience!
- Note 1: despite the product description, please do not stick this in your ear (or any other orifice that’s not your nose, for the love of all that is holey)
- Note 2: we chose that one for a reason; the shape of the head prevents overtrimming.
- In contrast, we do not recommend this cheaper one that has a different shape head for a closer trim, which in this case, is not what we want.
Enjoy!
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