Dr Alan Balch Discusses the Value in Patient-Centered Stakeholder Conversations

According to Alan Balch, PhD, CEO of the Patient Advocate Foundation, having a common language that is centered on the patient is crucial when stakeholders come together with various value frameworks. Ultimately, he said it’s these value frameworks that are going to steer the patients in one way or another.

Transcript (slightly modified)

There are a number of different value assessment frameworks that have been created (NCCN, ASCO, ICER). Is there a way to reconcile these different frameworks?

Having some common language around cost, benefits, values, efficacy, safety, etc., because again, patients often think about those things in different terms than other stakeholders. So that’s sort of step 1, is how to come up with some common language and I think that starts with bringing everybody to the table as these things are developed from square one, not at the end of it. Or just in comments, but actually having all of the stakeholders from the healthcare system at the table as those things are being discussed and developed and designed because then you come up with something that does resonate at least with the stakeholders writ large.

But I think at the center of that conversation really should be the patients because that’s ultimately the person or persons to whom the value of the care experience is supposed to accrue. So, if you’re not designing these tools, these value frameworks in the shared decision-making tools in a patient centric way, in a way that patients can understand and interact with in a meaningful way and that delivers outcomes of information that are really personal to the patient, than it’s not going to be as effective as a tool to the individual patient.

It may benefit other stakeholders in the system, but I think the ultimate goal should be in a way to reconcile some of the differences between them as to have them be multi-collaborative stakeholder initiatives from the beginning with a strong emphasis on patient centeredness and having the patient voice—not just a patient or a couple of patients, but patient representatives as well as patient organizations at the table contributing to the development of the different inputs that are going to be a part of that tool, the cost variables, the benefit variables. What is value? Ultimately, what is the decision point upon which that value framework is going to be steering a patient one way or the other.