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the mobile app will see you now - part 2

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Part 2 in our series of discussions with Synced Care founder Dr. Aanand Naik, associate professor of medicine, health policy, and behavioral medicine at Baylor College of Medicine, explores the unburdening of patients through the creation of outcome goals that guide care planning for chronic disease patients.

In your work, what are the guiding principles for sustained patient engagement?

Now you’re really getting my opinion. Most of what I’ve told you I don’t think is all that controversial and think most people would agree with the things I’ve said before. A criticism I have of the patient engagement space is that we’ve been trying to engage patients around their preferences for a particular treatment or preferences for a particular therapy. This is a common example- women with early stage breast cancer often have an option for lumpectomy w/radiation vs. or a radical mastectomy.

A common example is this: Women with early-stage breast cancer often have an option for lumpectomy with radiation versus a radical mastectomy. The outcomes of the two are pretty similar. And so this is what’s often called a ‘preference-sensitive decision.’ If you’re going to do this in a patient-engaged way, [you would] bring these options to the women; inform them properly about the pros and cons, what can happen and how to make a decision; and then let them make the decision. That’s been the approach of the patient activation literature.

While in that particular example I can’t disagree with all that [and it] seems appropriate to me; I don’t like the philosophical approach here. It seems like the point of patient engagement is to get patients up to speed on medical knowledge as much as they’re able to do and then sort of make them part of the decision-making process in an almost burdensome way. I don’t think that’s the way to approach engagement or activation. I think the thing that we need to be figuring out or working out is, "What’s the outcome that matters to you?" So [determine] that end state, that end outcome, that end goal, and then make sure that those goals are grounded in what matters most to you. That’s the lay definition of a value: what matters most to you.

Spend time crafting out a very specific outcome goal, and then we can have conversations about the array of treatments, the whole burden of care, how many visits you have to come to, what you have to do at home, the medication, what tests you have to do — all the things that might be required to get to the particular outcome goal that matters to you. And to some extent, let the physician be the physician; let them say, "Well if this is the outcome goal that you want to get to, then I think it’s this array of care that’s going to be most likely to get you there."

How do you believe providers can support crafting outcome goal with patients?

The process that we’re developing has some specific rules. We start from values. In some work we’ve done, we’ve identified five categories of health- or healthcare-oriented values.

  1. Social and spiritual connections: To what sense am I connected to the people around me or my community or my god?
  2. Quantity vs. quality of life: Trade-offs to find that balance
  3. Independence and functioning: Important even if you want to live as long as possible. To what extent does it impact my ability to be independent?
  4. Life enjoyment: The things that make life meaningful. I say I want to live as long as possible, but if I’m not able to do these one or two activities that are really meaningful to me, then I don’t know if it’s worth living as long as possible. Is it worth the sacrifice of doing the thing that’s really important to me?
  5. Engagement: Where you are on the scale of active or passive (internal healthcare indicator)

Those are quite broad values, and the thing is, I think all people value them. If you try to get people to give you on a scale of 1-5 what they think is most important, they’ll rate all of them 5 out of 5. So then if you ask them to rate 1-10, you’ll start to see 8, 9, 10 or 9 and 10.

It’s only really when you are forced to make trade-offs because of a specific context — and the trade-offs might be because of economics or the reality of treatment or your health conditions — that you have to personalize the values to someone’s specific context. [For example], ‘connectedness is important to me,’ but how does it really play out? ‘Well, it plays out because I want to be able to have enough health to go. I have grandkids, and they really love to go fishing, and I love to go with them. So once a week I’m able to take the grandkids to go fishing.’ That’s an example of a value.

We start off with ‘spending time with my grandkids’ as the value. And then we move from value to very specific outcome goals. ‘Being able to go and pick up my grandkids and take them to the fishing pier once a week’ — that’s my specific health outcome goal. So we’ve developed this process to work from global values to more contextualized values, to outcome goals.

What, if any role, might technology play in supporting patient engagement outcomes?

I don’t think it’s the sole answer, ‘apps and technology will save everything’. ::laughs::, I’m not in that school of thought. I still think you need all these structures in place, with all these processes you need other structures, processes, shared sets of rules and expectations.

But then technology can make those things more efficient. And I really think on the patient side, if we can bring care to patients where they’re at, maybe help timeliness even more than patient centeredness — The right care at the right time, for the right people — technology is a great facilitator of that. I don’t think it’s even going to take 20 years; it’s probably going to take five years to really kind of change people’s expectations at that 20-minute appointment face-to-face with a PCP or a specialist is the way care is delivered. I think we’re just going to start to explore that. Technology will be the biggest driver of it.

What metrics are important to you in measuring patient engagement?

Being able to say that patient outcomes are consistent with what matters most to them.

Being able to identify a set of specific outcome goals and to say that they achieved them. That to me is probably the most important outcome — to say 'this is what the outcome goal was' and they actually achieved it. The problem with that is it’s a lot of work even just to set up what that outcome measure is, let alone did they achieve it or not.

On some level, we have created some survey measures that are broadly called 'patient-reported experiences.' They’ll tend to be a little bit more generic. And the ones that are disease-specific are a little bit better and can be more focused. For the heart failure measures: what’s your level of shortness of breath, what’s your level of chest pain, what’s your level of being able to walk before you get shortness of breath, what’s your burden of managing medications?

So there are these measures that get at both experience and outcomes.

Your research is on the leading edge on how these processes can be improved. You talk about engaging these physicians, and some are certainly more receptive than others. How might this relate to medical schools and educating the next generation?

I think you’ve touched on a real problem. Medical schools are so invested in the old paradigm, they don’t even realize it sometimes — especially in the last 20 years, and my own medical school is as much indicative of this as anyone else. You’ve sort of gone away from our mission of training the next generation of doctors and providing cutting edge care, to just being invested in the business of medicine. Most medical schools now make their money through reimbursements through routine healthcare, not even cutting edge or leading edge stuff. And to a large extent, they’re invested in the old system — the sort of fee-for-service, high-intensity care — so that’s going to make them laggards regarding leading change. No one really thinks you’re a doctor when you graduate medical school. You have to do a residency to learn to be a doctor. But a lot of residencies are tied into those same medical schools, and they still have those same incentive structures.

There is this challenge: do you have to train doctors in biomedicine or do you have to train them to deliver biomedical care from those biomedical principles? That’s not going to change, and it’s still a requirement. Now we’re adding in a body of knowledge that’s [not quite] antithetical to that approach, but it’s not overlapping completely. So there’s some complements and contrasts with it that are going to be important. There’s not enough time and space in the learning schedule for even some of these patient engagement principles.

Medical school curriculums are changing too. It was typically in the first two years you got all your biomedical training, and then in the second two years you started going to the hospital and clinic and did your pragmatic training. A lot of this needs to kick in [during] that pragmatic time period and where you’re preparing the medical students for the pragmatic time period. Some of the best innovations are coming out of medical schools, but they’re in little pockets of getting grants to do some cutting edge work, [so] it’s not translating to the training of doctors.