The first few times I saw or heard the term ‘Patient Engagement,’ I had a neutral – or even slightly positive – reaction to it. If patients are engaged in their own healthcare, that can’t be a bad thing, right? But over time, the use (and overuse) of the term has begun to grate on my nerves, and I’ve noticed other patients and patient advocates similarly expressing their dissatisfaction. I’ve set out in this post to explore and crystallize my thoughts about exactly why we find use of ‘patient engagement’ to be misguided, and perhaps even offensive.
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First, how are people talking about patient engagement? Here are a few general ways I’ve seen people using the term recently (not verbatim, but the gist):
- Our product is a patient engagement tool that will help you meet meaningful use requirements
- If only patients would get more engaged, they wouldn’t be so unhealthy and our country wouldn’t be in this healthcare mess
- Patient engagement is the goal of our app
- We are offering a clinic/session/seminar on patient engagement to help you improve your practice
- Our patient engagement product improves medication adherence and patient compliance
Ok, so the next step is to examine who is using this term:
- Companies and entrepreneurs who are selling a product
- Institutions and individuals whose compensation depends on patients being more compliant
- Well-intentioned organizations and people who legitimately want to improve healthcare, but who may lack a clear and specific vocabulary to express the difference they want to make
Who is missing from this list? The same folks who are missing from many healthcare conversations: patients. The term is most often used by those talking ABOUT patients, not WITH patients.
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Why isn’t Patient Engagement effective as a term? Let’s break it down. I asked a few smart e-patients who have or will attend the Stanford Medicine X conference what they thought about it, and their answers have helped shape my points below.
1. It’s too vague
What does this term actually mean? Everyone seems to have a slightly different definition. Because it’s so vague, patient engagement should not really be any person or company’s objective. It’s like having a goal of ‘being more motivated.’ You can’t put your finger on it; you can’t measure it; it encompasses many different aspects of self-improvement. It doesn’t really make sense.
Likewise, the fuzzy meaning of ‘Patient Engagement’ conceals important concepts and goals that we should be talking about more prominently. I’ll discuss these in detail below.
2. It implies patients are not already engaged, creating an atmosphere of blame
When I asked patients what they thought of this term, and their responses were almost uniformly defensive in nature; this tells me that this term is talking AT patients and not WITH patients. It implies that patients are non-compliant; it implies that ‘getting patients engaged’ is our big goal, which as we have already seen is a weak and immeasurable goal. As e-patient Laura Kersting Barre put it:
“I think every patient is “engaged” at some level. Being engaged can vary between and within patients depending on the circumstances. The current use of the term “engaged” implies that there are patients that are not engaged. I disagree strongly with this – what patient is not engaged with their own illness – they live with it and they have come to an appointment.”
From e-patient, Jamia Marisha Crockett:
“I don’t want to be engaged…I want a partnership with my healthcare team.”
3. It’s paternalistic
The term implies that if patients would only do what we told them to do, they could improve their situation. As Nick Dawson said:
“…Most often when I hear engagement its from an organization or individual who wants patients to do what they say and behave according to their definitions of healthy behavior. At its worst, it used as a proxy for loyalty to a specific provider or system.”
4. It’s a buzz-phrase that is used as a selling tactic
Looking at the entities who are talking about Patient Engagement, one can quickly see that it’s very often used by companies who are trying to sell a product to ‘payers’ or ‘providers’ (to throw a little industry jargon in there.) The aim is to decrease the burden on the payer/provider system through reduced office visits, medical errors, duplicate procedures, reduced time to diagnosis, etc – all of these things facilitated by ‘engaged patients.’ Patient Engagement is so overused as a ‘key value proposition,’ as a brand promise or claim, and as a selling tactic that it cannot possibly differentiate any product from another.
5. What about provider engagement?
When we talk about Patient Engagement, we are leaving out a vital 50% of the care relationship: providers. As Laura Kersting-Barre said:
“We also need to give equal weight to provider engagement. I have seen a few providers that were much less engaged in my treatment than me.”
As another said about providers:
“Are they aware of groups like this, events like MedX, services like 23AndMe, gadgets like Fitbit, tweet chats, etc? Are they practicing empathy and seeking to truly understand the life goals of their patients? Are they actively seeking ways to overcome traditional barriers like HIPAA, wRVUs, etc? Some certainly are, but isn’t it a bit hypocritical for providers and health systems to talk about engagement when they themselves have a lot of work to do?”
We talk often about behavior change, but usually it’s in relation to patients; however there’s certainly behavior change that needs to happen on the provider side if we are going to revolutionize healthcare.
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What are we really hoping to accomplish when we talk about patient engagement?What is this mystical, rainbow-adorned unicorn beast that we are trying to buy and sell? Here are a few things that I think are buried in the term, and I’m also borrowing heavily from this post by Dr. Rob Lamberts, This is what patient engagement really means.
What are the outcomes of improving the above? I believe that if we can improve communication, education & insight, and collaboration & partnership we will support patients in being:
- Empowered: knowledgeable, articulate, able to advocate for themselves
- Mindful of how their actions impact their health
- Trusting of their care providers
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I challenge all healthcare innovators to do the following:
- Talk about the impact we want to make in healthcare in clear, specific, and measurable terms
- Talk with patients, not about patients (for instance, by maintaining a patient advisory board and collaborating closely with its members)
I hope this is the beginning of a productive conversation; if you have thoughts or perspectives on this that I have not outlined, please add your comment below.
Other e-patients who contributed to this post: Kathy Kastner, Elizabeth Apple, Casey Quinlan, and Emily Kramer-Golinkoff.