Q&A with Alan Spiro: The Social Consequences of Disease

In this conversation, Alan Spiro, M.D., moves the healthcare narrative beyond how a person’s social factors can impact their health, turning the lens on instead on the social consequences of disease, how healthcare interventions and experiences reverberate from individuals throughout their community, and how virtual care can begin to address these impacts. 

Dr. Spiro serves on Pager’s Advisory Board. Among other roles, Dr. Spiro previously led Accolade as Co-Founder, Chief Medical Officer, and executive VP, where he served as program architect for the company. More recently, he served as Chief Medical Officer and Chief Growth Officer at Blue Health Intelligence, where he developed data-driven solutions to help BCBS Plans and their provider partners deliver value-based, contextual care solutions. He also served as Chief Medical Officer at Anthem National Accounts and Medica.

Can you talk us through the term ‘social consequences of disease’? What does it mean, and how does it impact the way we think about healthcare?

I've long been bothered by the term ‘social determinants of health’ (SDOH). I was trying to figure out what bothered me about it. And I finally decided that the issue with the term is that it is unidirectional. It suggests that social factors determine certain things about your health – which is certainly true – but what isn’t discussed is the social consequences that come from having an illness of some sort, or being sick. And those consequences are equally important – if not more.

How do you heal if you are living paycheck to paycheck? What happens if you can’t work because you’re sick, and then you don't get paid? If you're an hourly worker? How do you deal with being sick if you’re responsible for caring for elderly parents or children and you can't afford help? And what happens when you’re sick and you're isolated, because you’re a new immigrant or you don’t know anyone in your community? 

There's a myriad of social issues that occur when you’re sick – and we don't talk about those enough.

There's also a component with SDOH that puts blame on the individual. It suggests, for example, that because you're poor, you're going to get sick. There's almost an inevitability about it, which I hate. I'd much rather talk about social risks of disease rather than determinants. The language we use is extremely important, as we’ve discussed before. And I think that we need to pay more attention to it.

How does healthcare start to look different when we look at social consequences of disease rather than just social determinants?

First of all, we think more about what happens to people when they are sick, rather than the factors before illness that lead them to be sick. How do we help somebody? How do we get the right care in place for someone who is unlikely to be able to access it or navigate it on their own? For example, we don’t tell someone their only option is a transfusion if their religion doesn’t allow it. We find other options. We realize that your beliefs impact how you experience healthcare – but it's your belief, and we respect that.

How does that differ from traditional disease management as we look at it today?

Traditional disease management – and this has long been a criticism of mine about disease management – is focused on the disease, not the person. To quote William Osler, in contrast, I think, “It is more important to know what sort of person has a disease than to know what sort of disease a person has.”

People are social. They live their life in a broader context than just their physiology. You have to understand and respect that.

Within a healthcare organization, whose responsibility is it to begin to address social consequences of disease? Is it health systems? Is it doctors or nurses? Or, does this idea fall within the gaps of today’s healthcare system?

When I founded Accolade, it was because I didn't believe there was any place in the healthcare system to address this. I founded that company with the hope that what we call ‘health assistance’ would become a new profession – a profession that would be dedicated to helping the individual while they dealt with their disease. The concept has become very successful, and I'm thrilled with that, even though it never took the form that I had hoped it would take, which was to create this new profession.

I don't think that there are many roles that address this in today’s system. Previously, the family doctor took on a lot of these roles. It was what I call the “priestly function” of being a doctor, because there was a spiritual connotation to being a doctor. Traditionally, clergy also took on this role. We now live in a more secular society, and that's hurt the ability to fill this need.

What happens when we introduce virtual care services into the equation? Is there an opportunity for care providers to help with this virtually, or does that create challenges? 

Introducing virtual care is both an opportunity and a risk. The opportunity is that when you're doing something virtually, you're actually in people's homes. It's more personal than being in an exam room. If you take advantage of that ability to be in someone's home to gather information and to understand them more holistically within their own environment, it can improve things dramatically.

If, however, it becomes focused purely on efficiency and trying to over-automate, it can be a risk. Automation is great, and I am a true believer, but too much automation can be a liability, as you can miss the social and personal aspects of what people need for their care.

Imagine you’re using a virtual app and you're counseling someone about a diet for an illness. As part of that, you decide to go with them through their refrigerator and their cupboard, and you discover that whatever you tell them must fit the rules of Halal because they're devout Muslim, for example. Or maybe, you find out that their diet is heavy on certain grain, which may actually be detrimental to their health.

Or let's say you're looking at medications, and you go to their medicine cabinet with them and look at the drugs they're taking. And through that, you learn that they're cutting pills in half because they can't afford their copays. Perhaps you’re doing a video call, and you see kids in the background. You learn that they're watching their neighbors' kids because they live in an area where they need that kind of cross-support, because the neighbors have to work and have nowhere to take their kids for childcare. 

There's a window there to see what's going on and to tailor the care you provide to that individual’s life and experiences. You discover so much about a person when you're welcomed into their home virtually.

The last time we spoke, we discussed the importance of human-centric design. How do these two ideas fit together? How can we drive forward human-centric care while addressing some of these social consequences of disease?

Human-centric design comes into play when you consider the people involved in a virtual care experience. You can leverage technology to ensure that the clinician is delivering all the needed care for that individual. 

The technology itself can prompt a lot of this. For example, if someone is taking a specific medication, the technology can request a photo of all the individual’s medications. Or, it could request a photo of the inside of the refrigerator. Then, on the back end, you get into automated analysis of those images. It can pick up on clues that are both obtained from images, but also from responses to questions that are prompted by the technology to staff. Technology, in that broadest sense, is a “copilot” for the agent. Then, by aggregating and systematizing the answers in a structured way, and even by leveraging ongoing machine learning, you can improve processes and programs for the population as a whole.

In addition to leveraging technology to collect  and organize all of this information, there's a lot of data and documentation that's created during traditional services. How do we make sense of this data, and how do we filter out what's important versus what may not be as important for that individual?

This is where I lean on research, such as that done by Saul Weiner and Alan Schwartz. They've created a taxonomy for categorizing, aggregating and quantifying this kind of information. They call it ‘contextual care,’ and they have identified 12 domains of contextual care.

The challenge is that it requires focus and investment. If you create the right taxonomy and the right language that allows for the proper study of this, it enables you to continuously gather the data and generate information, learnings, and improvements.

One of the domains of contextual care is ‘competing priorities’. For example, you may learn that it's very common for single mothers between the ages of 24 and 35 to have childcare responsibilities that are a competing priority for their health. And by working with your population, you can learn how big of a problem it may be.

Then you can then model certain solutions to that problem. 

The point is, you have to quantify and study problems as a category before you can develop the processes and solutions that will work on a broad basis. If you have to recreate the solution for each person anew, it's too expensive and it doesn't happen.

Too many organizations start with the belief that they have to find solutions, and in a counterintuitive way, it ultimately slows them down. They're trying too hard to start with the solution, rather than the definition of the problem.Instead, I think the first thing they have to do is decide to create that data structure and that taxonomy. That's not an easy task, but I do think that's the starting point. 

A lot of our clients at Pager are very focused on efficiency, automation, and scaling services. In contrast, this seems to be the sort of program where some initial inefficiency might be a good thing. What are your thoughts on that?

There's a saying that you first have to become effective, then you can become efficient. I argue that it's only true if you become effective by gathering information in order to become efficient. I don’t think organizations necessarily need to give up any ROI or efficiency. I think that part of the challenge for companies, especially young companies, is to actually show how that more effective system leads to better efficiency. There's an R&D component here that we're not tapping into.

For example, for years, people were investing in research for a polio vaccine with no clear promise of return. But, once you find that vaccine, the effect is greater efficiency, and the return is clear. The challenge is that there's a period which involves learning how to be effective.

When you apply that idea to healthcare systems and companies like Pager, I think part of the expectation has got to be, "We just raised $70 million because we know that we're going to need that capital. But once we've got all of this built, we're going to have “cured polio.” We're going to become much more efficient." 

Do you have any examples of what “efficient effectiveness” might look like versus “inefficient effectiveness”?

Today, a lot of the navigation and concierge programs are extremely expensive. But, we can show that the same level of service and results can be achieved if we leverage the Pager approach, which combines technology with personalization in a more structured way – and in a way that saves money.

We know certain things are effective; we know that a personalized, “hand-holding” approach to dealing with diseases is effective. Now, we must understand: how do you take those same results and make them efficient?