Eliminating Data Silos to Benefit the Patient

Alan Balch, PhD: There’s all this effort to have patients put skin in the game, and they’re definitely putting skin in the game now, to the point where the patients that we serve are choosing between their medication and literally groceries, their car, and utilities. These are consumers who are making tragic trade-offs, based on their financial situations, to afford their care. They are the persons to whom the ultimate benefit of the service is supposed to accrue. All of the other stakeholders in the system, while they are consumers in a different way, they are benefiting in monetary ways that the patient is not.

I think it’s important for patients to have a financial stake in that arena. But, I also think it opens the door to a more prominent place at that stakeholder table when determining, “What is value?” How is that value going to be realized for the individual patient, especially low-income patients who are making trade-offs between their financial health, their personal health, and their physical health?

It really speaks to having everybody come together. This idea of sort of dividing, conquering, and pointing the finger at each other; or saying it’s one group’s cost over another group’s cost—I really think that is what we need to get away from. We need to bring everybody together around the notion of trying to bring benefit to that individual patient.

So back to the point about variance; I do think variance can be confusing for patients and difficult to manage. But oftentimes, variance can also be important if it speaks to variance in subpopulations and gets to, “What is unique?” There might be specific treatment options that really better realize my [patient’s] preferences. There may be a product that may not have as much likelihood of increased survival, but may have a lower side-effect profile. I may want to tradeoff between one of those other 2 variables.

Giving patients that opportunity in a shared decision-making environment, to sort of express, “What am I really focused on?” “Am I concerned about neuropathy?” “Am I concerned about getting to my daughter’s wedding?” “Am I concerned about not having nausea?” “What are my goals?” “What are the options available to me that really speak to what I want to try to get out of care?” It’s not that the patient needs to become a doctor to make those decisions. It needs to be a shared decision-making environment.

Ira Klein, MD, MBA, FACP: I think you said something important about variance that I should have said when I was trying to answer Bruce’s question. The actual learnings are several standard deviations away on the bell curve, in both directions. So when I was talking about brand drugs that work their way into a therapeutic category that already has drugs, we don’t share data very well. If we did, would we find out if there is a benefit in that product for those people who actually do really well when not expected to, or those who do not do well at all?

If we were better at sharing the data, that would move us along the innovation cycle, much more quickly. For some areas, we’re just not there yet. By looking at the margins and sharing data, we can get deep insights. So, it’s really hard to create breakthrough after breakthrough. Sometimes, the breakthroughs are there on things that don’t look so great if you can look deeper.

James Gilroy: Yeah, I fully agree. I’d say the day we launch a product or bring a product to market, based on the regulatory system, is probably the day we know the least about how it’s going to benefit patients. It’s everything, thereafter, as we do some of the post-market surveillance and capture real-world evidence around the impact of that product or service that may ultimately bring information to a patient or a group of patients. It’s important to say, “Maybe that’s not the right day to ask the question on value.”

Michael Kolodziej, MD: Yes, but let’s be fair. That’s because of the way drugs are priced these days. That’s just reality, right? If you can’t, you can’t have both ways, right? You can’t say, “Oh, we don’t really know how good this is until we have it around for a while.” I don’t disagree with that, but pricing it at a premium makes it impossible to allow that real-world evidence to be accumulated because you’re placing yourself in a highly regulated and restricted universe. You can’t have both ways.

Alan Balch, PhD: I think that’s where it does become important for patients to know the reality of what is known and what is unknown, and what the costs and benefits of the options before them are. They may make different choices based on their own financial situation or their goal. Like I said before, I think it is important to give that information to patients in a way that they can understand and digest. It’s not monolithic how patients think about value. If given a range of options, and knowing what the trade-offs and what the financial risks are going to be for different choices, I think you’d be surprised how patients would like to have their role in this process—to know and to be honest about what the options are, what the uncertainties are, the risks, the benefits, and what it means for the patient and family, and make a choice.

They’re the ones that are going to live with it. They have this hope and we don’t want that hope to be a false promise. Patients should be given information in a way that allows them to create knowledge, but at a level that they’re comfortable with.

Some patients just want to be told, “What should I do? What is the best option from your point of view, with your expertise?” But others, and we’re seeing this increasingly, want information. They’re out there getting the information off the internet, and they’re coming to the doctor’s office with this mountain of stuff. They already have in their head what they think they want. It might not be the best choice or they might not know all the options but then, that’s the conversation, right? I think that’s part of the challenge—that conversation is not reimbursed very well.

That time it really takes to engage with the patient in that shared decision-making realm, and have that goal-concordant care conversation is one of many things that are important to patients, but that is not currently reimbursed to the extent that it matches the value to patients. This is just one little example of why if we started aligning what’s reimbursed with what actually matters and what’s valuable to patients, I think you’ll start to see services that should be offered that mean something to patients—that really aren’t valued in the system appropriately right now.