Real patient engagement depends on defining it correctly

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.)

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%. (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.” (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 is an internal medicine physician and geriatrician who blogs at GeriTechThis article originally appeared on The Health Care Blog.

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