I have been on a cognitive exploration like no other. I have burrowed into the trenches of my psyche, swam through an ocean of confusion, and fallen into a chasm of healthcare acronyms all to answer one question: wtf does patient engagement mean?
“Patient engagement” is a term that seemingly means everything and nothing. Does it mean opening the app? Does it mean coming to appointments? Does it mean taking your medications? Yes.
Saying we need to solve patient engagement is analogous to saying you are curing cancer. It is the wrong level of abstraction to mean anything. I want to go through 3 major themes:
- Where patient engagement started and how we got to where we are.
- Why is it so hard to engage patients today?
- What does the future of patient engagement look like?
A brief history of patient engagement
I find it fascinating to read about medical history. To understand why patient engagement is a thing today, you need to start where it all began.
The ancients
During the period of ancient Egyptians (4000-1000BC), healers were both doctors and magicians, using “magic”, religion, and rudimentary science to control illness and death. The Greeks famously moved towards a more empirical approach, pulling the levers of science and reason to treat their ill. The Greeks uplifted their citizenry through the democratic process and so the relationship between a patient and doctor also evolved: a shift towards guidance and mutual participation. The Greek physician, Hippocrates, then bound physicians to the lifelong goal of doing no harm.
From Inquisition to Revolution
The medieval period saw doctor-patient relations take a setback; riding a wave of religious zealotry, scientists were burnt at the stake as witches, and healers were excommunicated and cast aside; the practice of medical science plunged into the dark ages. It was in the hands of god.
The French had something to say about it as “Man's search for liberalism, equality, dignity, and empirical science began once again.” The European Enlightenment ended the persecution of the mentally ill and re-sanctified the importance of scientific methods. The collaborative patient-doctor relationship was restored. It took over 1000 years.
Enlightenment to engagement
From 1700 onwards, the Western world was thinking from reason and what evolved from it was a medical world we might recognize. One difference between our world of healthcare, among quite a few others, was that patients played a very passive role in their care. They did what they were told. This was partly due to the huge asymmetry of information; most people knew very little about how their bodies worked and doctors fixed whatever ailments they had.
Medical paternalism mimics a parent-child relationship in that you do what you are told. You have a broken arm, have this procedure, and take these drugs, and hopefully, you will get better. Individuals are passive recipients of care.
As we moved through the 21st century, the Western world developed a healthy middle class. Capitalism and liberalism coursed through the veins of the populus and as a result, we began to play more active roles in health. Szasz and Hollender proposed 3 types of relationships between the doctor and patient in 1956, but that is all too academic and uninteresting for this essay.
What’s interesting?
Why is this relevant to what we understand as patient engagement today? Well, if I tried to define what is, I would say it is the extent to which a patient plays an active role in their health care. It is a byproduct of the movement away from passive/paternal care. Everything about how a patient engages with their doctor and care today is relatively antithetical to the previous 2000 years of medical care and treatment. But why?
As I said earlier, the US became liberal and individualistic, and how we delivered care changed. The Cambrian-esque technological explosion of the 2000s means you can now track your blood sugar on an app, see your sleep quality through a watch and learn about your surgery in VR. You can Google a set of symptoms and get a provisional self-diagnosis. We have breathed life into a world of plentiful health information and resources. It has got healthcare drunk on the idea of patient engagement.
No one ever stopped to ask the question, do patients want to be involved in their care? It’s complicated.
Why don’t patients engage with their health?
As I said earlier, this is sort of a bad question because the correct response is more questions: “engage with what, define engage, which patients and what conditions” and the answers to these will be very context specific. At least for now…
With that being said, I wanted to think through some of the psychological stumbling blocks that patients, digital health companies, and doctors will experience as we try to get people to “engage”.
Self-selection and moral hazard
One part of it is that these people are patients. If they suffer from a “preventable” chronic condition then they were clearly unengaged with their health to reach the point of diagnosis. Now you would hope a diagnosis would shock some people into changing but there is a large degree of perceived moral hazard in healthcare. Modern medicine has made it easy to keep people who are ill comfortable and so it is easy for patients to feel that a few pills a day will keep the doctor away or just to lie to themselves about the seriousness of their illness.
This problem is typically referred to as diagnosis denial and is not a new problem. To illustrate this point, in a study published in the Journal of Oncology, over a third of patients provided with a terminal cancer diagnosis, thought they were going to live. What it demonstrates is our ability to divorce our thinking from reality when it comes to our health. If you can kid yourself into thinking you can evade death, you can definitely lie to yourself about how important managing your blood sugar is or implementing an exercise regime.
This is a great joke from Ricky Gervais's latest special which describes a £600 trip to the doctor for an annual health check. Halfway through the joke where the doctor tells Ricky he is Pre-gout, Ricky says:
Pre-gout, right? And so he (the doctor) tells you all that and goes, “So, what are we gonna do about this?” And I wanna go, “What do you mean, ‘we’?” “I’ve just made you 600 quid, mate, right?”
[audience laughing]
“You’re gonna fix it, and I’m gonna carry on.” You don’t take a car to the garage and he goes, “Tires are bald.” “Back end’s gone. What are we gonna do?” “You’re gonna fix it, mate, and I’m gonna pay you.”
[audience laughing]
He went, “You need more fiber in your diet.” I wanted to go, “Get me wine with fiber in it, then.” “I can afford anything. You must be able to invent that.” He said, “You’re heavily constipated.” I wanted to go, “Get in there with a spoon, son.”
Whilst this is obviously a joke, I think it lightly touches a deeper truth about our over-reliance on modern medicine to fix us when we are broken.
The digitally dubious
What it means to engage patients in the world of digital health are MAUs and DAUs or app downloads. Moor’s law has meant that the progress of technology over the last 50 years has been generally exponential.
Our chimp brains struggle to grapple with exponential improvements in tech and the result is a generation that is digitally dubious. 29% of all people with diabetes are over 65 and 75% of people over 60 have hypertension which is all pretty obvious to people in healthcare; old people get sick and yet they will likely be the demographic that struggles digitally.
Whilst 65% of individuals over 65 have a smartphone, the question is whether they are inclined to use it. You can lead a horse to water as they say. My grandad has a smartphone, is he going to use it to track his blood pressure, even if his doctor tells him? I don’t know, maybe? The point is that the fact there is a question around it means that we are fighting an uphill battle regarding engagement in the tools we want them to use.
Wilful ignorance is bliss
Have you ever not opened your banking app for fear of what it might show you? The healthcare community like to say “What gets measured gets managed” but a lot of people don’t want to know how sick they are or how badly they are managing their condition. This is known as Avoidance within the psychological world.
Many people avoid all medical care for fear of the truth or don’t adhere properly to their care because of a fundamental, uninformed belief that it will get better by itself. In one study called Why do People Avoid Medical Care? the author theorized that the main reasons patients avoid care can be grouped into four buckets which you can see below.
In many cases, short-term ignorance is more comfortable than confronting the condition long-term.
Misunderstanding
In some cases, patients want to engage but don’t engage effectively. They want to take their medicines correctly but misremember instructions or in some cases just can’t intellectually grasp the severity of their condition. Low health literacy is a huge problem for engaging patients and the saddest part is that some patients want to engage. They just need to be communicated in a more effective way.
Here is a conversation that perfectly highlights this problem:
“Public health nurse: “Jill, I see you are taking birth control pills. Tell me how you are taking them.”
Jill: “Well, some days I take three; some days I don't take any. On weekends I usually take more.”
Public health nurse: “How did your doctor tell you to take them?”
Jill: “He said these pills were to keep me from getting pregnant when I have sex, so I take them anytime I have sex.”
This story is true. Jill is a single woman, age 21 years, who works as a house cleaner. She reads at about the second-grade level.”
This is from a study called “Do patients understand?” conducted Suzanne Graham, RN, PhD
Sometimes patients don’t understand because they can’t grasp the need to. Or maybe they engage in the wrong way like Jill.
Some thoughts on the future of engagement
Apps were a way to make the doctor more scalable. It was a way to poorly supercharge the care you received.
One of the problems of this new digital era of healthcare is self-management. That these new tools, apps, and wearables require you to be the flagbearer of your health and you receive little in the way of advice and help. Especially as we drive deeper into a clinician and staffing shortage.
As I said earlier, did anyone ever stop and ask if people wanted to be the flagbearers of their health? Did we prefer a bit more medical paternalism?
My take here is there is a useful middle ground and AI provides that opportunity.
Imagine a moment in the future, when as a diabetic you notice numbness and cuts on your feet. You then open your phone, you have a conversation over text about your symptoms, the AI automatically pulls blood sugar data, and you can take a picture of your feet and send it to the AI. At some point, it might be the case that you just have a conversation with the AI in your home, Tony Stark/Jarvis style.
Within a few moments, the AI gives advice about the immediate next things you should do and what might be happening to you. Here are three reasons why this experience is better:
- Technologically simple - 60-something-year-olds can text or have a conversation back and forth on their phone or have a conversation with Dr. Alexa/Siri in their home. This technology orients itself around the simplest human input: natural language.
- Low cognitive input - As a result of point one, you don’t have to open an app, manually log a bunch of data, or have a telehealth consult and spend 45mins out trying to understand how to turn yourself off mute. Managing your health is something you just do, rather than something you engage with.
- Better care - As Marc Andreessen said in his most recent essay “Every person will have an AI assistant/coach/mentor/trainer/advisor/therapist that is infinitely patient, infinitely compassionate, infinitely knowledgeable, and infinitely helpful. The AI assistant will be present through all of life’s opportunities and challenges, maximizing every person’s outcomes.” This will be true of having an AI doctor too.
So what do these things mean for engagement? Well, we don’t have a conversation about to what extent people engage with their cars or the extent to which they engage with lawyers. We just use the tools when we need them. This will be true about how we use an “infinitely patient, infinitely compassionate, infinitely knowledgeable, and infinitely helpful” AI doctor. AI will result in a step change for patients such that “engaging” with our health goes from being a chore to something we just do.
What I read:
https://apps.who.int/iris/bitstream/handle/10665/252269/9789241511629-eng.pdf
https://en.wikipedia.org/wiki/Patient_participation
https://en.wikipedia.org/wiki/Medical_paternalism
https://www.sciencedirect.com/science/article/pii/S1743919106000094
https://en.wikipedia.org/wiki/Hippocratic_Oath
https://ascopubs.org/doi/10.1200/JCO.2010.32.4459
https://link.springer.com/article/10.1007/s11606-014-3089-1
https://scrapsfromtheloft.com/comedy/ricky-gervais-supernature-transcript/
