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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PlantYou: Scrappy Cooking – by Carleigh Bodrug
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This is a book that took “whole foods plant-based diet” and ran with it.
“Whole foods”, you say? Carleigh Bodrug has you covered in this guide to using pretty much everything.
One of the greatest strengths of the book is its “Got this? Make that” section, for using up those odds and ends that you’d normally toss.
You may be thinking: “ok, but if to use this unusual ingredient I have to buy four other ingredients to make this recipe, generating waste from those other ingredients, then this was a bad idea”, but fear not.
Bodrug covers that too, and in many cases leftover “would get wasted” ingredients can get turned into stuff that can go into longer-term storage one way or another, to use at leisure.
Which also means that on the day “there’s nothing in the house to eat” and you don’t want to go grocery-shopping, or if some global disaster causes the supply lines to fail and the stores become empty (that could never happen though, right?), you will have the mystical ability to conjure a good meal out of assorted odds and ends that you stored because of this book.
Bottom line: if you love food and hate food waste, this is a great book for you.
Click here to check out Scrappy Cooking, and do domestic magic!
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The Miracle of Flexibility – by Miranda Esmonde-White
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We’ve reviewed books about stretching before, so what makes this one different?
Mostly, it’s that this one takes a holistic approach, making the argument for looking after all parts of flexibility (even parts that might seem useless) because if one bit of us isn’t flexible, the others will start to suffer in compensation because of how that affects our posture, or movement, or in many cases our lack of movement.
Esmonde-White’s “flexibility, from your toes to your shoulders” approach is very consistent with her background as a professional ballet dancer, and now she brings it into her profession as a coach.
The book’s not just about stretching, though. It looks at problems and what can go wrong with posture and the body’s “musculoskeletal trifecta”, and also shares daily training routines that are tailored for specific sporting interests, and/or for those with specific chronic conditions and/or chronic pain. Working around what needs to be worked around, but also looking at strengthening what can be strengthened and fixing what can be fixed along the way.
Bottom line: if your flexibility needs an overhaul, this book is a very good “one-stop shop” for that.
Click here to check out The Miracle Of Flexibility, and discover what you can do!
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The Health Fix – by Dr. Ayan Panja
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The book is divided into three main sections:
- The foundations
- The aspirations
- The fixes
The foundations are an overview of the things you’re going to need to know, about biology, behaviors, and being human.
The aspirations are research-generated common hopes, desires, dreams and goals of patients who have come to Dr. Panja for help.
The fixes are exactly what you’d hope them to be. They’re strategies, tools, hacks, tips, tricks, to get you from where you are now to where you want to be, health-wise.
The book is well-structured, with deep-dives, summaries, and practical advice of how to make sure everything you’re doing works together as part of the big picture that you’re building for your health.
All in all, a fantastic catch-all book, whatever your health goals.
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Food Fix – by Dr. Mark Hyman
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On a simplistic level, “eat more plants, but ideally not monocrops, and definitely fewer animals” is respectable, ecologically-aware advice that is also consistent with good health. But it is a simplification, and perhaps an oversimplification.
Is there space on a healthy, ecologically sound plate for animal products? Yes, argues Dr. Mark Hyman. It’s a small space, but it’s there.
For example, some kinds of fish are both healthier and more sustainable as a food source than others, same goes for some kinds of dairy products. Poultry, too, can be farmed sustainably in a way that promotes a small self-contained ecosystem—and in terms of health, consumption of poultry appears to be health-neutral at worst.
As this book explores:
- Oftentimes, food choices look like: healthy/sustainable/cheap (choose one).
- Dr. Hyman shows how in fact, we can have it more like: healthy/sustainable/cheap (choose two).
- He argues that if more people “vote with their fork”, production will continue to adjust accordingly, and we’ll get: healthy/sustainable/cheap (all three).
To this end, while some parts of the book can feel like they are purely academic (pertaining less to what we can do as individuals, and more on what governments, farming companies, etc can do), it’s good to know what issues we might also take to the ballot box, if we’re able.
The big picture aside, the book remains very strong even just from an individual health perspective, though.
Bottom line: if you have an interest in preserving your own health, and possibly humanity itself, this is an excellent book.
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California Is Investing $500M in Therapy Apps for Youth. Advocates Fear It Won’t Pay Off.
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With little pomp, California launched two apps at the start of the year offering free behavioral health services to youths to help them cope with everything from living with anxiety to body acceptance.
Through their phones, young people and some caregivers can meet BrightLife Kids and Soluna coaches, some who specialize in peer support or substance use disorders, for roughly 30-minute virtual counseling sessions that are best suited to those with more mild needs, typically those without a clinical diagnosis. The apps also feature self-directed activities, such as white noise sessions, guided breathing, and videos of ocean waves to help users relax.
“We believe they’re going to have not just great impact, but wide impact across California, especially in places where maybe it’s not so easy to find an in-person behavioral health visit or the kind of coaching and supports that parents and young people need,” said Gov. Gavin Newsom’s health secretary, Mark Ghaly, during the Jan. 16 announcement.
The apps represent one of the Democratic governor’s major forays into health technology and come with four-year contracts valued at $498 million. California is believed to be the first state to offer a mental health app with free coaching to all young residents, according to the Department of Health Care Services, which operates the program.
However, the rollout has been slow. Only about 15,000 of the state’s 12.6 million children and young adults have signed up for the apps, school counselors say they’ve never heard of them, and one of the companies isn’t making its app available on Android phones until summer.
Advocates for youth question the wisdom of investing taxpayer dollars in two private companies. Social workers are concerned the companies’ coaches won’t properly identify youths who need referrals for clinical care. And the spending is drawing lawmaker scrutiny amid a state deficit pegged at as much as $73 billion.
An App for That
Newsom’s administration says the apps fill a need for young Californians and their families to access professional telehealth for free, in multiple languages, and outside of standard 9-to-5 hours. It’s part of Newsom’s sweeping $4.7 billion master plan for kids’ mental health, which was introduced in 2022 to increase access to mental health and substance use support services. In addition to launching virtual tools such as the teletherapy apps, the initiative is working to expand workforce capacity, especially in underserved areas.
“The reality is that we are rarely 6 feet away from our devices,” said Sohil Sud, director of Newsom’s Children and Youth Behavioral Health Initiative. “The question is how we can leverage technology as a resource for all California youth and families, not in place of, but in addition to, other behavioral health services that are being developed and expanded.”
The virtual platforms come amid rising depression and suicide rates among youth and a shortage of mental health providers. Nearly half of California youths from the ages of 12 to 17 report having recently struggled with mental health issues, with nearly a third experiencing serious psychological distress, according to a 2021 study by the UCLA Center for Health Policy Research. These rates are even higher for multiracial youths and those from low-income families.
But those supporting youth mental health at the local level question whether the apps will move the needle on climbing depression and suicide rates.
“It’s fair to applaud the state of California for aggressively seeking new tools,” said Alex Briscoe of California Children’s Trust, a statewide initiative that, along with more than 100 local partners, works to improve the social and emotional health of children. “We just don’t see it as fundamental. And we don’t believe the youth mental health crisis will be solved by technology projects built by a professional class who don’t share the lived experience of marginalized communities.”
The apps, BrightLife Kids and Soluna, are operated by two companies: Brightline, a 5-year-old venture capital-backed startup; and Kooth, a London-based publicly traded company that has experience in the U.K. and has also signed on some schools in Kentucky and Pennsylvania and a health plan in Illinois. In the first five months of Kooth’s Pennsylvania pilot, 6% of students who had access to the app signed up.
Brightline and Kooth represent a growing number of health tech firms seeking to profit in this space. They beat out dozens of other bidders including international consulting companies and other youth telehealth platforms that had already snapped up contracts in California.
Although the service is intended to be free with no insurance requirement, Brightline’s app, BrightLife Kids, is folded into and only accessible through the company’s main app, which asks for insurance information and directs users to paid licensed counseling options alongside the free coaching. After KFF Health News questioned why the free coaching was advertised below paid options, Brightline reordered the page so that, even if a child has high-acuity needs, free coaching shows up first.
The apps take an expansive view of behavioral health, making the tools available to all California youth under age 26 as well as caregivers of babies, toddlers, and children 12 and under. When KFF Health News asked to speak with an app user, Brightline connected a reporter with a mother whose 3-year-old daughter was learning to sleep on her own.
‘It’s Like Crickets’
Despite being months into the launch and having millions in marketing funds, the companies don’t have a definitive rollout timeline. Brightline said it hopes to have deployed teams across the state to present the tools in person by midyear. Kooth said developing a strategy to hit every school would be “the main focus for this calendar year.”
“It’s a big state — 58 counties,” Bob McCullough of Kooth said. “It’ll take us a while to get to all of them.”
So far BrightLife Kids is available only on Apple phones. Brightline said it’s aiming to launch the Android version over the summer.
“Nobody’s really done anything like this at this magnitude, I think, in the U.S. before,” said Naomi Allen, a co-founder and the CEO of Brightline. “We’re very much in the early innings. We’re already learning a lot.”
The contracts, obtained by KFF Health News through a records request, show the companies operating the two apps could earn as much as $498 million through the contract term, which ends in June 2027, months after Newsom is set to leave office. And the state is spending hundreds of millions more on Newsom’s virtual behavioral health strategy. The state said it aims to make the apps available long-term, depending on usage.
The state said 15,000 people signed up in the first three months. When KFF Health News asked how many of those users actively engaged with the app, it declined to say, noting that data would be released this summer.
KFF Health News reached out to nearly a dozen California mental health professionals and youths. None of them were aware of the apps.
“I’m not hearing anything,” said Loretta Whitson, executive director of the California Association of School Counselors. “It’s like crickets.”
Whitson said she doesn’t think the apps are on “anyone’s” radar in schools, and she doesn’t know of any schools that are actively advertising them. Brightline will be presenting its tool to the counselor association in May, but Whitson said the company didn’t reach out to plan the meeting; she did.
Concern Over Referrals
Whitson isn’t comfortable promoting the apps just yet. Although both companies said they have a clinical team on staff to assist, Whitson said she’s concerned that the coaches, who aren’t all licensed therapists, won’t have the training to detect when users need more help and refer them to clinical care.
This sentiment was echoed by other school-based social workers, who also noted the apps’ duplicative nature — in some counties, like Los Angeles, youths can access free virtual counseling sessions through Hazel Health, a for-profit company. Nonprofits, too, have entered this space. For example, Teen Line, a peer-to-peer hotline operated by Southern California-based Didi Hirsch Mental Health Services, is free nationwide.
While the state is also funneling money to the schools as part of Newsom’s master plan, students and school-based mental health professionals voiced confusion at the large app investment when, in many school districts, few in-person counseling roles exist, and in some cases are dwindling.
Kelly Merchant, a student at College of the Desert in Palm Desert, noted that it can be hard to access in-person therapy at her school. She believes the community college, which has about 15,000 students, has only one full-time counselor and one part-time bilingual counselor. She and several students interviewed by KFF Health News said they appreciated having engaging content on their phone and the ability to speak to a coach, but all said they’d prefer in-person therapy.
“There are a lot of people who are seeking therapy, and people close to me that I know. But their insurances are taking forever, and they’re on the waitlist,” Merchant said. “And, like, you’re seeing all these people struggle.”
Fiscal conservatives question whether the money could be spent more effectively, like to bolster county efforts and existing youth behavioral health programs.
Republican state Sen. Roger Niello, vice chair of the Senate Budget and Fiscal Review Committee, noted that California is forecasted to face deficits for the next three years, and taxpayer watchdogs worry the apps might cost even more in the long run.
“What starts as a small financial commitment can become uncontrollable expenses down the road,” said Susan Shelley of the Howard Jarvis Taxpayers Association.
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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How to Find Happiness In Yourself – by Michelle Mann
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A lot of books about happiness tell you what to pursue, generally. What things to focus on, and that’s good, but incomplete. This book does cover those things too (complete with academic sources to back up what really works), but also goes further:
Michelle Mann gives 25 key habits that will cumulatively build happiness, which is what it’s really about. After all:
- If you watch your favourite movie, you’ll be happy for 90 minutes (or 9 hours if it’s The Lord of the Rings).
- If you build daily habits that add happiness to you, your surroundings, and those around you, you’ll be happy for life.
They do also cover happiness while going through difficult times, such as divorce, job loss, illness, or bereavement.
Sometimes, knowing what we “should” do in theory is the easy part. Where Mann excels here is in providing explanations of each habit. This means that rather than it being some platitude, the principles underlying it are truly understood… and thus motivate us to actually apply the advice and build the habits into our life.
While the explanations are therefore the greatest value of the book, we do recommend copying out the 25 habits (which are effectively subchapter headings) and putting them somewhere to read often.
Bottom line: we recommend getting yourself (and/or your loved ones!) a copy of this book. You (and/or they) will be happy you did!
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