Patient engagement. Why is it so crucial to healthcare transformation? andculture’s Director of Innovation Transfer Acceleration, Lauren McAteer, interviews leading researchers and Synced Care founders Dr. Aanand Naik, associate professor of medicine, health policy, and behavioral medicine at Baylor College of Medicine, and Dr. James Suliburk, assistant professor of surgery at Baylor College of Medicine, as we unpack the future of patient engagement and the opportunity for novel technological solutions in this space.
A 2012 report calculates 69 percent of total U.S. healthcare costs are tightly linked to consumer behavior and that 31 percent of spending was directly attributable to chronic conditions influenced by behaviors.
Patient engagement is the buzz word and panacea for all the health system woes. If only patients were more ‘engaged,’ those in the healthcare industry often lament. But what does patient engagement really mean? More importantly, what are the ingredients for the secret sauce to move the needle in this area?
Tell us, how did you begin your work in patient engagement?
It began when I was in clinical training, mostly as a resident and a fellow. Most of my colleagues were fascinated by a strange or unusual disease or a particular condition that they wanted to specialize on and discover a new treatment. I was different; I was more fascinated by the run-of-the-mill patient who comes in and keeps coming in and keeps getting readmitted. We’re not providing the best of care for them even though there are adequate therapies out there; for some reason, we’re not able to use them effectively.
This is particularly relevant for older adults with multiple chronic conditions. What becomes apparent when you take care of that population is you have the 75-year-old who has high blood pressure, diabetes, chronic lung disease, arthritis… run-of-the-mill conditions that people acquire in their 70s and 80s and they’re the patients who really impact the cost of care because, how do you manage them? The problem with this population is that when you start to do best practice for each condition, you actually quickly realize that you’re talking about 20+ medications and you have to come to the doctor every week, and you have to do all these different tasks at home, and it actually becomes untenable and the burden on patients becomes so great, so they sort of disengage from their care to some extent.
Finding the best evidence and just applying it to them is the scientist of the physician approach. So that’s where I started, that was my question. How do you best approach these patients? How do you take care of them?
Surgery outcomes are better than they have ever been before. But to take the next big leap to get to zero preventable deaths after surgery, we need to focus on patient optimization and patient engagement in self-care.
The reason is that now more than half of post-surgical complications occur when the patient is already at home. The reason is we’re just so good at controlling pain and minimizing techniques that patients don’t have a need for hospitalization anymore; they’re out of the hospital either the same day or 3-4 days later as opposed to a week later. Complications now happen when the patient is already at home. We have to be able to empower patients to detect these complications before they get so bad that they cause physiologic compromise.
My work involves studying what techniques can be used to engage patients. As well as from the educational research perspective, what are the ways we can empower and educate patients using technology?
There’s so much conversation right now about patient engagement, and it sounds like the secret sauce in a lot of ways — if only we could engage patients, costs would decrease, quality would go up and everyone would just be more satisfied. It seems like the ‘engagement’ word has become passé or just completely lost its meaning. How do you define this space?
So there’s a practical answer and then an academic answer. The practical answer is I don’t think it matters; they all mean the same thing. How do you get people involved? Not just passively have the doctor telling them what to do, but how do you get them more involved in what’s important to them? Or certainly have them actively involved in the steps that are required to make them healthy or get them where they want to be — but even actively involved in the decision-making around it, not just doing the activities?
Academically, ‘activation’ has gotten captured by a research team that developed a well-validated measure, called the Patient Activation Measure (PAM). The PAM is a set of survey items. I might have included one or two more different items, but I see no disagreement with the scale overall. It’s got a lot of correlation, maybe even some causation, to outcomes.
So that’s what my work is currently doing. We’ve done 45 semi-structured interviews with post-surgical patients to figure out how to operationalize engagement. The best analogy I can use to understand patient engagement is that it’s a lot like what the Supreme Court Justices said about pornography. They said we can’t really define it, but we’ll know it when we see it.
Patient engagement is very much that exact same way. It is extremely challenging to operationalize and define engagement. But if I see a patient who is going through a post-discharge assessment, and who says, "Yes I know how to take care of my incision; I know how to change my bandage dressings; I know how to perform these basic physical therapy exercises on my own and I understand that I’m going to do them for 30 minutes three times a day once I get home." When they go through a checklist and actively say that yes, they understand this, this and this, and can teach back their post-discharge care plan, then I know that patient is engaged. I know that they’re going to do well.
How we actually define that and how we actually get it to happen is definitely the holy grail. There’s a lot of lip service and talk about engagement. But it is something that is really challenging to quantify at the end of the day.
Backing up a bit — what’s your diagnosis of why patient engagement now?
Two things. I think in general, the passive attitude was the norm. Part of the shift is the shift from acute care medicine to chronic care medicine. We do much more chronic disease care than we did in the past. The past was much more acute. You know you got an infection, and you got an antibiotic, and you got better. You got appendicitis, and you got surgery, and you’re better. It was a lot of you’re well, then you get sick, and you have an immediate treatment, and the treatment gets you get well again.
In the 1950s, sociologist Talcott Parsons conceptualized the medical sociology term ‘sick role,’ and this ‘sick role’ was characterized as a form of deviance. So the norm is to be healthy and being sick is a deviant state. In a sick role in some extent, you give away some of your autonomy to get well. That’s the bargain you had as a patient. It doesn’t mean it to be tyrannical in any way; you sort of voluntarily gave up some of your autonomy to the healthcare system and to doctors in particular, and you sort of do what they tell you because they know better than you do. (I’m not saying I agree with any of this — this is just the model).
You do what they tell you and you get better. You give up some of your autonomy, but you get better. And you’re no longer in the deviancy role.
For many many years, all healthcare professionals were socialized in that model — either overtly but more often subtly educated in "the hidden curriculum," as it were. I would even argue that that’s changed over the last several decades, but it’s still a big part of the hidden curriculum. A lot of this has changed because of chronic illness and because of the fact that for patients, passive deviance just won’t work, for all the reasons I mentioned about chronic illness in older adults. Patients have to become activated and engaged and even decision makers to some extent, for their care to be better and for the system to be better.
One thing that’s gone for the worst for engagement: in the past, medicine was maybe more simple. There was a set of what you called family doctors or your PCPs, and they knew you as a person — knew you within your family structure or your culture. Our communities were more homogeneous, so the doctor really knew the patient well. Some of this activation/empowerment stuff was more intuitive, or more just part of what the generalist physician did, and now there’s no time for any of that.
I think it’s always been the elephant in the room, ever since I was in medical school. The key thing that has changed over that time is the new way we’re delivering healthcare. Healthcare is an economy now. There is a focus on improving outcomes and cutting costs. The most basic way to cut costs in healthcare, to cut costs from the inpatient side, is to decrease the length of stay.
Patient education and training used to take place because the hospital lengths of stay were a week to 10 days to two weeks. So you’d stay, and the team would gradually impart these pearls of wisdom on the patient. The patient would get a little bit better and a little bit more understanding each day as things progressed.
Fast forward to now, we are under the gun to cut the length of stay, reduce complications. The pay-for-performance measures of MACRA and healthcare reform mandate this. So that’s what has brought engagement into the forefront because there are now penalties for hospital readmission. It used to be if the patient bounced back to the hospital it was just an expected thing, and hospitals didn’t really worry about it because they still were making money, they still got paid.
Now hospitals are not getting paid for those readmissions; in fact, they’re getting penalized. As a result, there is a significant financial motivation for people to pay attention to patient engagement.
As we get closer and closer to the deadlines to 2017, pay-for-performance is going to mandate that we come up with solutions to this. It’s just simply not acceptable to discharge a patient who doesn’t understand how they’re going to take care of themselves and then have that person bounce back to the emergency room 48 hours later. That’s not an appropriate care paradigm in the modern era.
Share with us your vision of the future for patient engagement and technology in healthcare.
Technology could enable the process — i.e., the process of eliciting values and then defining outcome goals for patients broadly, and then for specific conditions/encounters/experiences — to make it easier, more efficient, in real-time. I think if technology can help with that, it would definitely speed things up.
Technology can better enable communication between patients and the system and clinicians and the system. Right now, we’re in a phase where healthcare professionals sometimes balk at the technological innovations. We’re drowning in all the data points: blood pressure measurements and sensor measurements and the bells and whistles of the machines going off; all the alerts and the reminders in the EMR [electronic medical records]; there’s a lot of noise and not a lot of signals. So I think [we need] to hone the signal. A lot of this is in communication, so really an underappreciated aspect of healthcare is the communication that happens between a patient/family member and healthcare provider.
The way that any technology or process can make that communication more efficient, effective, responsive? I think physicians will roll their eyes anytime you say, "I have this new app that will allow your patients to get a hold of you better, or in more real-time." I think the patients might love that, but you’re going to get a lot of pushback on the providers.
So how to design it for timeliness on the patient side but also the timeliness on the provider side — the right communication at the right time to the right person? I think the first step might be to unburden them of the non-value added. Unburden them from the technology.
My holy grail or ideal vision is that through Synced Care, we develop and promote digital technology as a means for patient education and empowerment to deliver the best care possible, at the highest quality level possible, with the best outcomes possible.
Because knowledge is no longer the limiting rate step. We have more knowledge than ever and know what to do better than ever. But the key is the just-in-time application and the appropriate application of that knowledge. That’s where digital technology, I think, is going to be key to delivering that knowledge at the point of care for the patient or the clinical team, to where it is useful and it results in meaningful impact towards improved outcomes for the patient.