Pathways for Person-Centered Care: Standardizing the Patient Engagement Process

Alright, so we're here today with Dr Alan Balch of the National Patient Advocate Foundation. To begin, Dr Balch, when you hear the term clinical pathway, what comes to mind? What has been your specific experience with them?

Dr Balch: I usually think back to the Cochrane Review definition from several years ago when I try to define or think about how to describe a pathway. It usually involves an attempt to standardize a regimen of care, typically on a guideline or some sort of evidence-bases set of materials. It's translating those guidelines or an evidence-base into standardized steps, set of steps for a particular disease or a particular intervention.

Usually, it's an attempt to try to create a set of steps, or to identify a pattern of steps or an algorithm, if you will, a decision tree or a decision algorithm based on certain attributes, symptomatic or otherwise, that you are using to help guide what might be the most evidence-based and appropriate care for a particular patient.

We want to get your thoughts on patient-centered care in the grand scheme of this conversation. I want to ask you, do you view pathways as drug treatment algorithms that can be used as a tool alongside patient-focused initiatives, or do you believe that patient-centered care can be directly integrated into pathways?

Dr Balch: I think it's both. Certainly in the cancer space, we see an emphasis on pathways being limited more to drug treatment. In other disease areas, and certainly in other countries more broadly, Australia comes to mind, Canada, pathways are really tools that aren't specific to just one stage of treatment, but typically span multiple stages of care, from diagnosis all the way to survivorship.

I think ideally, you would actually have a care pathway, that spans the journey that a patient experiences as it relates to their care, at least several aspects of it. You would have a treatment pathway embedded in that. Ideally, you would have a drug pathway, if you are, or treatment pathway, but as part of a larger set of pathways that really help identify and guide appropriate care and evidence-based care for the individual. They're not mutually exclusive. You can certainly have both.

At least in cancer, we would like to see an expansion of pathways beyond just drug treatment, but really into the other dimensions of the patient experience as relates to cancer. That gets us to your second part of that question, which is, how do you integrate patient-centered care, or we use the term person-centered care, into a pathway.

We actually have this idea that you could actually have a pathway for person-centered care. What I mean by that is, if we define from a clinical delivery perspective, we think about person-centered care as a set of interventions.

That includes shared decision making, care planning, and then a care planning that leads to a care plan, and then ultimately, a set of measures and patient-reported outcomes that are at least, to some extent, grounded in that decision making and care planning process.

Because those are different steps and different processes, if you will, in a delivery paradigm, you could imagine the delineation of a pathway that would help create the steps by which or the methods by which that you would utilize shared decision making, and care planning, and then ultimately, what the dimensions of a care plan would be.

You could use a clinical pathway model, if you will, to help standardize the delivery of what we would consider to be person-centered care. Of course, as part of that pathway, you could have treatment-specific pathways embedded within that.

If you're making, as part of a person-centered care, a cancer pathway, for example, you could have a drug pathway embedded within that.

If some chemotherapy is indicated or evidence-based as a choice within the treatment or the course of care for a particular patient, then you could have a decision tree or a clinical pathway that would help determine what would be the most appropriate medication for that patient.

That would be just one step in a larger process of having an approach to care that is person centered.

The real difference in what we see now and what the future might hold or what a person-centered care pathway might allow patients to have in front of them is a way to standardize, if you will, the engagement of the patient.

In a person-centered pathway, we would envision that there would be specific steps in places where the patient's feedback and the information and the input from the patient would help build out the next steps or would help determine the next steps in the pathway.

That's probably the biggest difference in pathway design is we do see many pathways, particularly now, that are predetermined. There's not a space or room for the patient to interact with the pathway or their input to interact. It's almost predetermined.

In that case, it's not a decision-making tool. The decision is already made. You're trying to use the pathway to say, "All right, based on this set of characteristics of a patient, what I already know about them, this is what the pathway says I should use."

We do feel like there is a way to use a pathway that would take feedback from the patient in a dynamic sense and use that feedback to then help determine what is the next step in the pathway or what would the pathway say that might be the best choices for a patient based on some of their personal attributes, whether it's, obviously, the stage of disease... I keep going back to cancer as an example. It's a useful one. Other attributes like the ability to travel, transportation limitations, work limitations, other aspects of the person's individual experience and preferences that could be called out in the pathway experience to help determine what is the most appropriate course of therapy or course of care for a patient.

We feel like there's a great opportunity for pathways to not be tools that make decisions on behalf of patients but tools that help standardize and then integrate feedback from the patients into a process that would assure that, where the evidence supports it and wherever possible, that specific individual preferences could be gathered through the course of the implementation of a pathway for a particular patient.

Then that feedback could be used to help determine what is the appropriate care and then, ultimately, how the care plan is populated for a particular patient.

If you think about a personalized care plan, you could have a pathway that could help guide the process that you use to help personalize the care plan for the patient, including what might be the appropriate measures in patient-report outcomes for that patient.

If you think about those choose your own adventure books where you get to certain points in the story and you make a choice about what you want to do next. You could imagine a pathway would help guide you through and identify where those key decision points in making decisions about different care options including medication, or diagnostics, or any number of elements of the cancer or other disease journeys. It could help identify where are there important points or opportunities within the patient journey to identify and learn from the patient what their preferences might be, and then use that information along with other clinical information and diagnostic information to determine what are the best choices or what are the potential options that a patient and their family may choose for themselves.

You're envisioning patient feedback, for lack of a better term, inputs being used to determine appropriate care for a patient or using patient feedback in a pathway to help create a personalized care plan. You spoke to some specific considerations, and I'm curious have you seen or heard of any pathways programs currently sophisticated enough to consider such items or things like considerations of employment while on therapy, or allowing patients to choose a therapy based on a preferred side-effect profile, or managing patient financial toxicities?

Dr Balch: A little bit. Most of my experience with seeing some of these pathways in terms of how they work is more in the cancer space and have not seen much of that. Like I said, most of them seem to be an attempt to try to a priori determine what's the one treatment for 80% of patients. If that's your starting point that you've already decided what's the one thing for 80% of patients, there's not a lot of opportunity to customize or use the pathway to determine what's the right course of therapy.

I'm not going to identify specific vendors because I don't want anything I say to be seen as an endorsement of any particular commercial product. I have seen one pathway that has given their users, those that are deploying that pathway into their clinical environment, they've been willing to work with them. If that clinic, that health system, decides they want to have more flexibility in the pathway protocol, where they've actually engineered buttons, if you will, that say, "I'm going to make a decision based on a transportation need or a clinical trial need, or some other need that would allow for a decision to be rendered that is outside of what the pathway would automatically determine.”

The challenge with that is that decision ends up being considered off pathway. It's used as a justification for not do what the pathway is telling you to do, but it's basically saying, "I'm going to check this box as my justification for doing something differently than what the pathway is telling me to do."

Again, most of these pathways are set to say, "Do this one thing," for 80% of patients. When that one thing doesn't seem to be the best fit for a patient based on some attribute like transportation is the one example I've seen, and it could just as easily be work disruption or some work-related issue. For example, a particular regimen may have a side effect like neutropenia or nausea, some side effect that would make functioning at work more difficult for a particular individual, based upon what their job performance requires and the work that they conduct.

You could imagine that a simple approach, rather than trying to build the whole algorithm, would be to allow as someone's using the pathway to check a box, so to speak, to say, "My decision about what treatment was used ultimately or to some degree was based on a transportation issue or a work-related issue for the patient."

I do know that that functionality, some pathway vendors have the ability to engineer an out, if you will, from the pathway based on other attributes besides just the clinical description of the patient, their stage in their disease, for example.

I do think we can be way more sophisticated, as I described earlier, by creating a pathway that isn't just about deciding on the right medication, but delineates a structured approach to how to engage the patient, having a shared decision-making experience and having cues in the pathway to make sure you ask about transportation requirements, work requirements, other things that may be important to patients.

The pathway could help you build a set of information about the patient that when you turn to the point in the pathway, when you're starting to make a decision about what's the appropriate care and treatment, you've learned some key pieces of information about the patient that would help you then determine, based on side-effect profile, based on other aspects of a particular treatment regimen, what might be the best fit for a patient, assuming that there are alternatives.

This approach works best in treatment environments where there are multiple treatment options. They have cases where there is one option that's the best option, and you should be trying to standardize care pretty rigidly around the delivery of one particular type of treatment. You see this a lot in surgical protocols, maybe in the management of things like CVD, diabetes, etc.

In areas where you're seeing a lot more personalized medicine like cancer, it makes a lot more sense for the pathways themselves to be able to incorporate and be able to personalize care to the individual the same way that the medicine and the other technological attributes are creating the ability to customize and personalize care to the individual.

The diagnostic environment would be another place where there's a lot of instruments that can be deployed to help understand the biological and genetic characteristics of a particular disease like cancer that then helps determine what may be the right or most appropriate treatment for that individual.

Similarly, there are other attributes of the patient's life and their experience that could also be used to customize care. We come back pretty consistently to transportation requirements or burdens, as well as caregiver requirements and burden, and then finally workplace disruption and burden, as three elements that could be or should be, from our perspective, incorporated in the pathways as key variables to help guide decision-making and care planning.

When you're gathering all that personal information and you're helping build a profile of information about an individual patient, you're likely using patient attributes that may be a direct result or have a relationship with "social determinants of health." We heard quite a bit a lot of that at the Oncology Clinical Pathways Congress. We're hoping you could speak a bit more to the social determinants of health specifically.

I want to ask you, Alan, how can pathways do a better job of considering social determinants of health when making treatment choices, and specifically, which social determinants of health are most pertinent to the pathway discussion?

Dr Balch: I’ll build off some answers I've already given, but maybe frame them more specifically in the context of social determinants of health. I have seen a much greater emphasis in the need to incorporate social determinants of health into the clinical journey of a patient.

We already know that those are things that oftentimes determine the health of a patient before they arrive at the clinic, but then those same attributes, the same social determinants also help shape and, in many ways, create barriers to the patient's journey once they're in the clinic and receiving care and treatment.

The time has come for us to not treat those as externalities in the clinical journey of a patient, but just like we do with other side effects and other issues that patients face psychological burdens, we certainly from a clinical perspective try to provide psychological support, different types of peer-to-peer and group counseling sessions, yoga, those types of services within the clinic. Why not also start to think about how to provide social support services related to the social determinants of health as part of the clinical care journey.

Using a pathway model to help identify at what points in time and for what patients, when do you engineer, and how do you have those conversations, what would be the screening protocols that you would deploy to help determine risk for, or presence of, specific social determinants of health, how to use that information to then influence or help guide care decisions as well as care and treatment decisions, as well as care planning. It's a complicated environment.

That's why the ability of pathways to help standardize care and help create a method by which clinicians can use to determine when they should inquire about social determinants of health. What tools they should use to make those inquiries and how to use that information to guide care decisions and care planning once you have that information, that can all be built into a pathway.

We don't know enough about every social determinants of health and every disease condition, to be sophisticated enough to map all that out, how to ask about each attribute, how to screen forward, and how it relates to care.

In cancer, we're learning enough or know enough, at least we feel like we do, from our insight and work we do with low-income patients, I've mentioned them many times, but transportation burden and workplace disruption, as well as housing, food, and nutrition are probably four social determinants of health that you could incorporate into decision making and care planning pathways.

You make sure that you're considering those four attributes for each patient as you're both deciding on what's appropriate care, as well as planning for their care. It's unreasonable to expect that pathways can incorporate an infinite number of variables related to the social determinants of health.

I do think the challenge before us is to identify what are the three, four, or five key social determinants of health that really have a potential significant impact on the patient's lived experience as well as their care experience, and which of those are actionable, or which of those can be used to differentiate decisions, and which of those can be addressed or assuaged in some way through careful care planning.

That's why we, as an organization, have identified the ones that I just mentioned because in many cases, those are transportation, work disruption, housing, food and nutrition. There are others we could add to the list.

I'm just trying to curtail a little bit here to help elaborate a little bit on what it might look like from a design perspective. If you could imagine that, at least for cancer, the list would be different by disease.

In other diseases, we don't see as much work disruption, for example, or transportation burden. For example, with HIV/AIDS, it's an oral regimen mostly taken at home, especially once you've been diagnosed and you're further into treatment, your visits to the clinic, into the hospital are fewer and farther between.

You wouldn't expect to see the same type of transportation burden that you would, say, in a chemotherapy regimen for multiple myeloma, where, even after an intensive two or three day a week regimen for several weeks, you're still going in for quite a long time, potentially for chemotherapy, once a week or every other week.

Not all diseases have the same...they have different burdens as it relates to social determinants of health. That's the level of inquiry and evidence that we need to build to understand what are the key by disease, by geography, racial and ethnic group, and by age, what are the key social determinants of health that affect the patient's experience – not just their clinical experience, but their lived experience – and when do those social determinants of health need to be addressed and incorporated in terms of decision-making and care planning.

We know enough about some of those answers as it relates to cancer. That's why I come back to that because it's a great place to start in terms of thinking about how to use person-centered care as a model for developing a pathway, based on decision-making, care planning, and measurement that matters to patients that builds in key social determinants of health as part of the clinical care decision-making and care planning process.

A pathway model sounds a little oxymoronic, if you will, but the idea is standardized to the delivery of personalized care. Pathways is a great tool to standardize care. We've maybe over titrated on it for the purposes of standardizing care in the name of trying to minimize unnecessary variation in care, which is appropriate.

You can also use standardization models to maximize appropriate variation in care. A pathway can tell you when are there appropriate points in time and for what patients and what attributes you can personalize care against.

Helps you create a standardized way of making sure that in your clinical processes around decision-making, care planning, that you're standardizing the incorporation of key attributes of the patient experience.

What comes out at the other end, in terms of a care plan, has been personalized to the individual along a standard set of key dimensions, beyond just side-effect profile and a set of clinical endpoints. Not to say that those aren't important. Those should absolutely be in the mix.

We're missing a tremendous opportunity to personalize the care to the individual by not creating standardized approaches to how to incorporate biomarker and genomic profile information into patient care as it relates to cancer and similarly, issues like transportation, work disruption, housing, food and nutrition issues into the decision-making and care planning experience.

As I say those four things, those also relate to the caregiver. Oftentimes, it's not one person going through the experience. It's more than one. The same person in that home and part of that care journey is experiencing those same barriers – the transportation burden, the workplace disruption, the food and nutrition issues, the housing issues, are not just limited to the patient, but often their caregiver is exposed to that same set. I'd just make that point because it's not just thinking about those attributes as it relates to the patient, but also thinking about them as they relate to the caregiver.