Patient Engagement: On Metrics and Meaning

What is patient engagement?

Everyone agrees that it’s a good thing, and that we healthcare providers should be fostering it.

How to do so, however, depends on just what you believe patient engagement means.

As Dan Munro recently pointed out, the term “patient engagement” is a hot buzz phrase, and – in the best tradition of such phrases – it’s amorphous enough and appealing enough to mean…just about anything.

Provided that it that makes us feel good about healthcare, of course. Better yet, provided that it casts our favorite healthcare approaches in a favorable light. (Rob Lamberts nicely summarizes some angles of the term here.)

I actually rather liked Munro’s post, titled “Patient engagement: Blockbuster Drug or Snake Oil?” until he got to this part: “We now have some very real metrics around what constitutes real patient engagement and Leonard highlighted two impressive examples.” He goes on to point to two studies of care coordination for chronic illness — one at Kaiser and the other at the VA – and summarizes some key improvements in outcomes.

At Kaiser, they included things like decreased mortality rates and fewer emergencies, as well as improved cholesterol screenings and more people meeting cholesterol goals. With the VA’s Telehealth program, hospital days were reduced and patient satisfaction was 86%. (BTW, I had a VA primary care clinic from 2006-2010, and several of my patients were in Telehealth.)

These are indeed nice results. Still, somehow they didn’t impress me as constituting “real patient engagement.” They seemed more like “real population health management, facilitated by teams, care coordination, communication infrastructure, and organized protocols.”

Shouldn’t real patient engagement mean more than this?

Defining patient engagement

Here’s my current take:

Supporting patient engagement means fostering a fruitful collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.

Quite a mouthful, eh? Ok, if I had to pick out the most important parts, I’d say they are

  • Collaboration, which means working together effectively.
  • Agreed-upon health goals, which means each side understands what the other hopes to get out of their work together.

In other words, to truly foster patient engagement, it’s not enough to just work together more closely on achieving a given health outcome. It’s also important to work together on deciding which outcomes to pursue, why to pursue them, and how to pursue them. In doing so, we engage patients in a meaningful care partnership that respects their priorities, preferences, perspective, and situation.

Communication with patients is, of course, essential to all of this. This is why any innovation that improves a patient’s ability to access and communicate with healthcare providers is proudly labeled as “patient engagement.”

Also, communication technologies do facilitate data exchange, and can help patients implement a plan. So for instance, the VA’s Telehealth program made it easy for veterans to regularly report home measurements such as weight or blood pressure. And these readings were reviewed by trained nurses, who would call my patients if data entry stopped, or if a measurement triggered some kind of alert.

All good stuff. But not enough, in my mind, unless we’ve also made some efforts to support communications such that the patients understand – and get to weigh in on — how our clinical efforts are serving their health needs.

Otherwise, these improved communication technologies just become a better way for us to tell patients what to do, and help them do it. I suppose this does improve patient engagement if we define it as more contacts with the healthcare system, or as decreased utilization which will surely make the payers happy.

But I would like to see us strive for more of a joint problem-solving partnership with patients. Patients are, after all, the experts on how their health problems affect their lives. And it is in tapping, and nurturing, that expertise that we’ll be most likely to improve their health in ways that are most meaningful to them.

This, of course, becomes especially important in geriatrics and for those patients with multiple chronic illnesses. Their medical complexity mandates that care be individualized, and that they actively participate in this tailoring of their care. (Dr. Larry Weed, as I noted in my commentary on “Medicine in Denial” really gets this; his book is good reading if you are serious about getting healthcare to better serve patients.)

The trouble is, historically we’ve not done a good job in medicine of involving patients in setting goals; usually clinicians have assumed they know what’s best for patients. Clinicians have also often not had the time — or sometimes the interest —  to understand what is feasible or desirable to the patient.

The advantage to this approach is that it’s fast; negotiating a mutual understanding takes time, after all. High blood pressure? Here’s a prescription for HCTZ. And maybe a handout on low-salt diet. Next!

For certain patients, this approach can actually lead to decent medical outcomes. This is assuming that the clinician’s directive is supported by the evidence, is feasible for the patient to implement, and is in fact a suitable match for the patient’s goals and medical situation. (Reducing blood pressure will probably have more benefits – and be less burdensome – in the average 50 year old than in a frail and declining 93 year old.)

But what about when high blood pressure treatment – or reaching cholesterol goals, for that matter – isn’t what’s most important to the patient? Sometimes other issues, such as pain or incontinence or memory problems or anxiety about prognosis are what’s most important to a patient.

Shouldn’t “real patient engagement” address what’s really important to the patient?

Metrics of engagement

Back to the examples of patient engagement cited above. What are the “right metrics around what constitutes real patient engagement”?

Obviously, it will be difficult to agree on metrics if we don’t first agree on the definition.

If you buy into my definition, then the relevant metrics would need to measure things like the patient’s understanding how a given intervention was going to help him or her with her health goals, and how well the intervention fit in with the patient’s health needs overall. It would also be nice to measure things like increased feelings of self-efficacy in managing one’s health, or confidence that the clinical team is being helpful.

But from the description of the Kaiser and VA programs mentioned above, we really don’t know how the patients felt, and whether being in these programs helped them feel like active and empowered participants in their care. (Or helped them feel that their clinical teams understood their health needs and were collaborating with them.)

In truth, I suspect that my definition of patient engagement will probably not be widely adopted by those with clout: the big health providers, the payors, and the pundits. From the perspective of the providers, my guess is that patient engagement will mean things like:

  • How often does the patient contact/connect with us, especially when we want them to?
  • How often does the patient behave as we would like them to?
  • How much does the patient like us, and bring us their business, and – most importantly – do they give us good ratings on surveys and talk us up on social media?

(Check out this Patient Engagement Index that ranks Florida hospitals.)

For the payors, I expect patient engagement will mean care coordination programs and other innovations that result in lower utilization. Money, after all, does make their world go around.

As for the pundits…likely will depend on who is writing for whom. For example, here’s a recent sample of what we’re likely to keep reading: “[The iPad] allows medical professionals to work on a device of their choice taking patient engagement to the next level.” (Hm. Somehow doctors having mobile connectivity is going to get patients more involved in healthcare.)

In other words, engaging patients – in the strict sense of more contacts and encounters with patients —  doesn’t automatically mean that the patient’s needs and experience are central.

Sounds like most of medicine. Still, these care coordination programs and increased opportunities for patients to communicate strike me as progress in the right direction.

I’m just not going to call it “real patient engagement” unless I think it helps clinicians collaborate with patients to meet their health goals.

Summing it up

If we are to foster “real patient engagement,” then we will need to be more specific about what it is, so that we can agree on what kinds of metrics or outcomes demonstrate it.

To me, supporting patient engagement means fostering an effective collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.

This collaboration should work towards medical outcomes that the patient understands and has had an opportunity to help determine. This helps ensure that the medical care truly serves the patient’s needs, priorities, and preferences.

Otherwise, to leverage improved communication and access in order to get patients to reach the health outcomes prioritized by clinicians basically means we’ve become more effective at getting patients to do what we want. This might result in improved health outcomes for individuals and populations, but falls short of what we could and should aspire to: helping patients meet their health goals.

If we want patient engagement to mean collaboration on mutually-agreed upon health goals, we will need to find effective ways to measure the quality of this collaborative process. Documenting reduced mortality and morbidity is not enough.

Leslie Kernisan, MD, MPH, has been practicing geriatrics since 2006, and is board-certified in Internal Medicine and in Geriatric Medicine. She is a regular THCB contributor, and blogs at GeriTech.

28 replies »

  1. The focus tends to remain on the providers not the patients. In fact, engagement must begin with persons a long time before a health crisis erupts and they become patients. After 40 years of therapy, it is obvious to ask first what goals the person and her support system want to achieve. The providers can understand and discuss how to accomplish those goals. We cannot wait until a person is in the clinic or hospital to start listening, communicating, educating, etc.

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  4. Thank you for the links, Sandra. These things are paramount in helping to spearhead Culture Change and helps give support to passionate Pioneers like me.

  5. I just came across a great article written by Thomas Smith, et al., and sponsored by ASCO in the Journal of Clinical Oncology. It addresses integrating palliative care into standard oncology care, but it also asks if this approach, which it describes in details from multiple studies, should be applied to more chronic care situations. If you look at the team approach that they are talking about, it points to the type of information you’re talking about, Lori. And interestingly – it shows reduced costs, better outcomes (including longer life) and greater satisfaction.


  6. Great article and intriguing replies. What I am gathering here is that the focus is on the physical. Given that, what about taking it a step further and considering the foundation of engagement. I mean it is most important to begin at the beginning. I believe that is the psycho-social aspect of “engagement”. I am an Engagement(activities) Director in eldercare and that is the very focus of what I do, primarily. Before a doctor can treat a physical problem it is necessary to know the physical details. The problem is for most, it stops there. Lets consider ” person- centered” care, “quality of life”. Who are they, where do they come from, what about their family, what is most important to them, what do they enjoy(or dislike), hobbies, major life changes, etc? If the goal is the best possible outcome then these questions need to be asked and recognized. We are working with people first and not the illness or disease etc. the focus is and always should be the outcome, right? That begins with a relationship. People are relational beings and there is no way around that. We cannot leave that very important aspect out. Unfortunately that takes time and costs money so the REAL question in any type of medical or personal care is one of moral and ethical grounds. I believe this is our greatest challenge. What are YOU gonna do?

  7. In my mind it’s closer than you articulate. In retail, you want people to want and successfully utilize your product or service and use engagement to facilitate that. I think that if consumers and patients could more successfully utilize healthcare products and services, and want to utilize them because they understood the utility and consequences of not utilizing them, there would be less consumption – at least of higher cost products and services – than there is today. For example – you want the right people to get the right vaccinations? How do they find the right information about that now? Shouldn’t there be much more robust efforts to get people to not only get the vaccines they need but to understand what benefit they’ll derive from them? I think it would be more successful to use “engagement” strategies (retail style, if that is what works) than to use the usual “do as I tell you and don’t worry about it”.

  8. A key difference, I think, is the end goal of the pursuit of engagement.

    In the business world, engagement is an elusive and ephemeral marketing tool that attempts to break down the barrier between product or service and the consumers life… all in the interest of selling and making more money.

    I don’t think that’s the end goal of the kind of engagement being talked about here, which is really, in the end, more about improving the patient’s health.

    So I have high hopes.

  9. I often remind patients to take a medication. But that’s in the context of having discussed the why of the medication and how it helps them meet their goals.

    It is the context and overall intent that matters.

    Agree that far too often we just try to get them to do what we think is right for them.

  10. Reminding someone to take a medication really isn’t what most of us mean by Patient engagement – that is simply finding a way to get people to obey the plan the doctor created for them. It sounds like a good strategy for “compliance” and the patients might even appreciate big brother at first but it just doesn’t have the “spirit” of patient engagement.

  11. I had discussed this article with my family physician and queried “how many patients are seriously attended to by the doctors who believe in Patient Engagement. I was stupefied when he said that he has started using a new BLE device called Gecko for getting alerts when his patients don’t take their medication on time and he reminds them immediately. He said it is very useful especially when it came to his “aged” patients who do not have other near & dear ones to remind them and would have missed their medication. He further stated that he has been referring this device to his co-doctors too.

  12. “the doctor-patient relationship require trust, good communications, mutual respect, empathy and understanding”

    I honestly have patients who don’t want any of those from the doctor-patient relationship, and it would be rude, paternalistic, and presumptuous for me to try to force them on them.

    Every patient is a 100% unique person, with a 100% unique idea of what engagement means for them. Trying to impose measurements on such a variable set of experiences is inevitably fallacious and ultimately destructive.

  13. some things can’t be measured, and this “we have to measure something” instinct needs to be squashed.

    When someone with multiple chronic diseases comes into the office, there is no easily measurable outcome. Maybe their blood pressure needs to be higher than “goal” because they fell over on the golf course last week, and don’t always remember to drink an extra glass of water a few times a day. And they run a bit higher than usual when in clinc.
    (And, btw, they never really liked higher dose statins due to aches.)

    They are sick of colonoscopies and they will never have a great PHQ since their spouse died and they now live alone (with a son close by, but it’s not like a spouse). But they don’t want a “happy pill”.

    I can oversell a buch of BS interventions on such a patient, in the name of “quality,” or I can practice good care, for which I’ll be penalized.

    good times.

  14. Steve, I worry about unintended consequences – if you did a trial to see if things were better, perhaps I could see what you mean as long as the trial wasn’t gamed to give certain results. My concern is that interactions would become too uniform and not allow for the individualization that is so important for both patients and clinicians. For example, when you’re told you have cancer or HIV, you probably need a different type of engagement than if you’re told you’re overweight and need to stop smoking to reduce your risk of heart disease. I thought we learned a bit about that from “Stages of Grief” that applies to all sorts of things – not just death – and need a more flexible approach. We can all get better I’m sure, but scripting doesn’t seem like a good idea, or even looking at specific components. I’m also disagreeing with your observation that “most of us have never met a clinician who really has a good bedside manner”. Maybe most of us have not yet been ill enough to experience that, but hopefully we’ve had family members who’ve had those kinds of experiences that we’ve observed. I’ve seen bad but I’ve also seen great interactions between patients and clinicians.

    One thing I think would help is to separate out healthcare activities into 2 categories – first, what’s needed to identify and communicate about a problem (i.e., diagnosis); and second, what’s required to figure out an implement the best plan possible to address the problem. They really require different skills, tools, timeframes, etc. Too many, I think, lump them together and don’t understand why the same stuff doesn’t work for both. It seems that patients have problems with both areas (i.e., incorrect or poorly communicated diagnosis vs. unrealistic, poorly executed, understood or otherwise unsuccessful plan). If there were tools to address each issue separately, I think we’d get a lot further in getting patients and providers “engaged”. Both want success, and success builds on success in my experience.

  15. So true that the bar is generally set low because of previous experience and cultural expectations!

    well, I think we need to act on both fronts, and agree that the micro measures will provide important feedback and information. Whether they will ultimately serve best for research or targeted situations (such as a provider who keeps having poor outcomes) versus used more globally, remains to be seen.

  16. Leslie,

    I wonder what one is supposed to do with the types of “macro measures” you are describing. Here’s what I mean.

    We all have been socialized from childhood to play the “sick role” when it comes to seeking health care….opposite the clinician who assumes the”expert role.” We (as patients) set the bar for our expectations for provider service and experience from the confines of the sick role. It’s kind of like a tiny person looking up at a giant. When asked if the giant has a good bedside manner of course we are going to agree. Besides…since most of us have never meet a clinician who really has a good bedside manner we have no real grounds for comparison.

    I am not denigrating the importance of the patient perspective. It’s just that the micro measures may be needed to see how accurate the patient’s marco measures really are.

  17. hi 40yearold doc,
    Agree that one must be cautious about attempting to measure everything.

    But at the very least, we might consider giving patients (and providers) some common-sense questions that they can ask themselves. So for instance, patients might ask themselves: do I feel like I’m getting what I need from my healthcare? Do I understand what my doctor is doing and why? Do I feel like my doctor is trying to help me, or just pursuing his/her own agenda?

    Kind of like the clarifying questions that therapists ask…
    Because we need some way to cut through the noise of all the powerful people saying “we are achieving real patient engagement!”

  18. hi Steve, thanks for bringing this Adopt One challenge to my attention, very interesting!

    I also appreciate these detailed comments re measures. They do strike me somewhat as “micro-measures” whereas in writing this article I was really thinking of a patient’s macro feeling over time: do I feel like I’m getting what I need from my healthcare? Do I understand what my doctor is doing and why? Do I feel like my doctor is trying to help me, or just pursuing his/her own agenda?

    There is that maxim: Not everything that can be measured matters and not everything that matters can be measured.

    On the other hand, I did some quality improvement training back in the day, and we gotta measure something…so we are in a bit of bind, but things overall are improving I think.

  19. Dear 40 year old doc,

    Relationships, particularly one as important as the doctor-patient relationship require trust, good communications, mutual respect, empathy and understanding. I am sure you could list more.

    Each one of these variables can be and are frequently measured in a wide variety of ways…from the patient’s perspective, physicians perspective and third party observe perspectives. Best practices exist which describe how clinicians in “promising” practices (e.g. high patient satisfaction, high productivity, etc.) interact with patients. There are also lists of what patients want in terms of the ideal physicians.

    The only scenario where quantifying indicies of physician-patient relationships might take away from the quality of the relationship is where one ignores the findings of such measures

  20. Leslie,

    Nice piece. In part you answered you own question as to how to measure patient engagement in the following statement.

    Communication with patients is, of course, essential to all of this. This is why any innovation that improves a patient’s ability to access and communicate with healthcare providers is proudly labeled as “patient engagement.”

    Evaluating the “give and take” of physicians and patients during exam room conversations (using audio/video recording) reveals a tremendous amount of data as to 1) how engaging physicians are and 2) how patients behave in response to the clinician’s communication (more engaged or disengaged). The fact that patients are already in the doctor’s office is prima facie evidence of their engagement.

    Presumably we might all agree that measures of engagement would include the number of questions a patient (person) asks, whether and how the clinician answers the patient’s questions, how much information they share with the clinician and how much they hold back, how frequently patient leave with unvoiced expectations or voice and unmet expectations, if patients were invited to ask questions, limited in the number of questions they could ask, and so on.

    The Adopt One Challenge, a national campaign aimed at measuring and improving doctor’s patient communication skills, e.g., engagement skills,
    will examine these questions and more. We expect to validate that by and large clinicians continue to employ the same physician-directed, paternalistic communication skills they learned in med school…and that their biggest challenge is not how to engage..but rather how to avoid disengaging already engaged patients.

  21. “If we want patient engagement to mean collaboration on mutually-agreed upon health goals, we will need to find effective ways to measure the quality of this collaborative process”

    I agree that patient engagement is critical, but I think trying to measure it is a fool’s mission.

    Each doctor-patient relationship is unique, based on what expectations and commitments each of the two brings to the relationship, a relationship that is continually changing over time. Can we objectively measure the quality of a friendship, of a romantic relationship, of a teacher-pupil relationship? By giving in to the fallacy that everything can be measured, we will destroy the very thing we want to quantify.

  22. Thanks for these comments.

    @Sandra, I’m going to have to print your comment and put it close to my computer, so I can look at it when I find myself wrestling with a writing topic and wondering whether I should keep blogging.

    @AnonymousMD, you raise an interesting point. My own take is that when I use the word “patient” I’m presuming an interaction with the conventional healthcare system. Otherwise, agree that each person has a certain level of engagement with their own health (physical/mental wellbeing) and health care (deliberate actions to affect health). Not sure what people generally call this…personal health engagement?

  23. Great article and an enjoyable read.

    I feel though this is written from a slightly too provider centric perspective. My definition of patient engagement is not a patient being engaged with the healthcare SYSTEM and what the players would like them to do, regardless of their good intentions, but rather the patient being fully engaged in owning and bettering their own health, which can require very different actions and relationships depending on the person.

    For those of us with an acute or chronic illness, that probably does mean engaging in a collaborative relationship with a provider. For others who are well, being engaged might mean using the education received from school or public health nurses and other professionals to stay committed to a healthy diet and regular exercise, and the apps and fitbit I use to track both.

  24. Leslie, I’m going to put you on my list of “angels walking here on earth”. Lovely piece – thanks, and thanks for all you write. I hope everyone reads it – patients, families, clinicians, administrators, insurance execs, state and federal regulators…so many would join the conversation, I think, and maybe there could be real change.

  25. Excellent article and spot-on. I’ve worked for large corporations that are on board the engagement bandwagon….with little idea what it really is. So it ends up being a survey that is great for the survey vendor, allows HR to say they “did something” and glosses over the real drivers of engagement like meaningful work, development, fair pay and working conditions and the like.

    I hope health care does a better job…….