Why we need to move beyond the term ‘Patient Engagement’

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.

* * * * *

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.

  • Communication: between patients and providers, or patients and caregivers for example. As Dr. Lamberts said in his post:

    “Communication isn’t important to health care, communication is health care. Care is not a static thing, it is the transaction of ideas. The patient tells me what is going on, I listen, I share my thoughts with the patient (and other providers), and the patient uses the result of this transaction for their own benefit.”

    If we can support and improve communication to and from patients, we can therefore help improve the healthcare experience. Improved communication is a more specific goal with clearer outcomes.

  • Education & self-knowledge: this means that patients understand their treatment options, their medication schedules and side effects, their treatment plans, their blood results, etc; but they also are provided with well-formatted, actionable, insightful personal data that they can use to make decisions and behavior changes.
  • Collaboration and partnership: also commonly referred to as ‘shared decision making;’ patients and providers work as a team and collaborate on all aspects of the patient’s care.

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

* * * * *

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.

* * * * *

Follow-up reading of interest: 

Patient Engagement – The Problem is that Doctors Aren’t Very Engaging

16 thoughts on “Why we need to move beyond the term ‘Patient Engagement’

  1. I have no arguments with what you have to say. Makes 100% sense. Having said that, despite being a congenital optimist, I think whatever term replaces pt engagement can just as easily get absconded by the same folks you justifiably criticize. This leaves me with two thoughts.
    1. I tend to see more value in some scale/index that has black & white measures of whether a provider, for example, exhibits patient centric behaviors. I’d like to see S4PM get behind such an index/score. As you know, I have start at it building off of the “7 habits of highly patient centric providers” piece I wrote that gathered your feedback and others. I’d happily hand over what I have as a starting point.
    2. Knowing that people need shorthands, what’s a better term. I’ve heard “patient achievement” but that doesn’t get to the two-way nature of providers needing to be part of it as well. Would love to hear your thoughts on that…

    • Thank you, Dave! I really appreciate your thoughts, and I sympathize – the same thought (‘what SHOULD we call it then?’) crossed my mind as I was writing this. I agree that any single term will probably be absconded, as you mentioned. But what I am advocating is perhaps avoiding using one single term to envelop so many different sub-concepts. There are words like collaboration and communication that get at the 2-way nature of the physician-patient relationship we are hoping to build; there is also the term ‘shared decision-making’ (which has had quite a bit of use but which might conjure a very specific tactic in people’s minds.) There is patient education, which is so important; there is data transparency and access, leading to patients being more informed and empowered. There is also behavior change, which I believe is one of the major concepts people are trying to communicate when they use the term Patient Engagement. One the one hand, I think this involves trying to get people to engage in healthier activities and make healthy lifestyle changes; on the other, it involves helping patients make changes in how they manage their healthcare and getting them to use digital tools (like logging into a patient portal, using an app, etc.) I am not sure what to call that last point. Give me my damn data?

      Regarding the patient-centric index for providers, I think that is a fabulous idea and I would love to see it happen – but I don’t know that it solves the patient engagement terminology issue. 🙂

      • I wanted to add a note here and a question for Dave – I do think having some kind of patient-centric metric could be a wonderful way to help patients find providers. Do you imagine the 7 habits would also help healthcare companies better communicate about their value and impact? That is one of the major places I’m seeing the term used. Curious about your thoughts on that.

  2. Hi Katie – Thanks so much for this.

    I share your concerns about this whole ‘patient engagement’ movement, and particularly the way that industry has clearly co-opted the concept in the interests of financial gain. I wrote about this in October 2012 after returning from Medicine X – http://ethicalnag.org/2012/10/16/industry-co-opted-patient-engagement/ – yet since then, haven’t come any closer to seeing a move away from this insidious trend. If anything, industry’s just getting more savvy – no matter what new buzzword we may come up with to replace “engagement”.

    I’m also weary of being the token patient invited to sit on health care “advisory boards” when in reality such inclusion simply allows organizers to tick the ‘patient included’ box while they go ahead doing whatever it was they’d planned to do in the first place.

    As a patient living with ongoing chronic issues, I struggle daily with what Dr. Victor Montori and his Mayo Clinic-based team call “the burden of treatment”. Patients like me – although outwardly appearing “engaged” to those who don’t know us (perfect for ticking boxes!) are often just trying desperately to put one foot in front of the other most days to survive. Assessing the quality of my engagement by how often I access a patient portal doesn’t seem to be a valid model – but what is? And unlike many of those I met at MedX, I don’t share the belief that going digital will somehow be the saviour of the patient engagement movement that it’s cracked up to be. As Dr Montori explains, this may simply “exceed the patient’s capacity to cope”.

    Lastly, I tend to agree with Laura Kersting-Barre who suggests here that providers also need to step up to the plate when it comes to engagement. I wrote about this recently in “Patient Engagement? How About Doctor Engagement?” on my Heart Sisters site: http://myheartsisters.org/2013/04/09/engaged-doctors/

    • Hi Carolyn, thank you so much for your comments. I really loved your post and am very happy to find this underground community of Patient Engagement questioners! Regarding the trend toward industry increasingly using the PE term, I agree it is a little disheartening, but it is up to us to bring the patient voice to boardrooms and conferences; to help educate those in the business of healthcare about how using more direct language will benefit them and their customers. I have hope. 🙂

      You have probably read the awesome DC Patient Donna Cryer’s post about the burden of treatment: Cumulative Burden: The real barrier to adherence for complex patients? http://www.dcpatient.us/2013/05/cumulative-burden-the-real-barrier-to-adherence-for-complex-patients/ I am sure she is echoing your sentiments.

      Thanks again.

      • Hi again Katie – FYI, the National Forum On Patient Experience is being held in Toronto on Tues/Wed of next week, and – surprise! surprise! – of the 32 conference speakers listed in the agenda, not one is a patient. (Well, one mentions that she has parents who used to be patients – I guess that’s close enough… )

        This is only of interest, really, because six months ago one of the conference organizers tried to publicize this event on a Linked In group (#hcsmca = Health Care Social Media Canada). Once the group’s members clued in that this conference was to be a patient-free zone, a furiously active flurry of comments exploded online in response to the organizer’s post (including from THE Dr. Larry Chu himself of MedicineX fame) each one urging the conference organizers to reconsider the importance of “nothing about us without us”, blahblahblah. The discussion is here: http://www.linkedin.com/groups/Connect-other-healthcare-leaders-NATIONAL-3487112.S.224279710?qid=795ace9d-2879-4001-9b0d-485cc74885eb&trk=groups_items_see_more-0-b-ttl

        Why did we even bother? The end result is yet another discouraging example of “those talking ABOUT patients, not WITH patients”

      • Hi Carolyn! Thank you for this. It is disheartening that they did not end up bringing patients into the conference, as the representative implied they would do. I think even when people have the best intentions, sometimes they don’t understand how to find the right patients to attend, and how to build the conference *around* patients instead of tacking them on in a session here and there.

        My hope is that people will realize that a patient engagement conference that does not involve patients is simply not legitimate. That as Medicine X and other conference set best-in-class examples, other conferences will eventually have no choice but to follow suit.

        How can we elevate this discussion to a place where major decisionmakers – senior Health IT execs, etc – can get better exposure to these ideas?

  3. Katie, this is a great post. I agree with most everything you are saying here. The truth is patients don’t even know what patient engagement is. Strange things happen in this wonderfully backward industry. There are not many engagement posts like yours, I only found this after I wrote this post Monday afternoon http://bit.ly/nomorepe We share many of the same views it appears.

    As for PE being a buzz-word or inappropriate terminology, 100% agree. However, I do agree with Dave that the name isn’t great but it won’t change the way traditionalists of healthcare view it.

    Dave, I’m not 100% convinced though of the realities of having black/white metrics over something so subjective. Yes it would be great to have them but that is part of the problem, what one patient may view as being engaged another may not and then one of them gets stuck in the grey area regardless. Either way I looking forward to reading your 7-Habits piece.

    P.S Carolyn, great post MedX article and I agree with you, reliance on only a digital solution is not the answer either…but it brings up lots of fun questions to discuss!

  4. Thanks for an excellent and timely post (and I’m so glad I found your blog!). I have recently started a PhD at the University of Melbourne in Australia – developing an online psychosocial assessment tool for young people in the family/general practice setting – and the term ‘patient engagement’ gets tossed around a lot without much insight.

    I wonder if ‘participant’ or ‘participation’ has the same problem. Before – and as well as my phd – I work in the youth mental health sector and ‘youth participation’ gets thrown around a lot but, like ‘patient engagement’ I worry that it is paternalistic (though not entirely unuseful).

    It’s great to have these discussions.

  5. Wow, what a wonderful post! I like what Marianne said about the term “patient engagement” being paternalistic. It’s patently paternalistic! It’s a great bisection of the culture to acknowledge the words we choose. (I’m not a fan of “e-Patient” but we need it for now.) Thanks for the post!

  6. I really like what is being said here and plan to adjust some of my language and create greater context in my work. I’m creating a webinar series “pathways to patient engagement” as it opens up dialogue in a broader context. The comments here are extremely useful especially the paternalistic bend that the term suggests.

    • Hi Kelley, thank you for your comment! It makes me happy that the post helped you rethink some the language you’ll use in your webinar. Thanks for joining the conversation.

  7. Amazing post. I have started a similar post so many times, but now that I read yours I can let go of the need to write it, knowing that you did it better! I really enjoyed finding your blog and look forward to reading more.

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