What It Means to Actually Empower a Patient

“The Point” Episode 3: Empowering Patients When They’re Navigating Complexity

Chris Ledford, The Grovery Operating Partner and VP Strategy: Welcome to The Point, where we believe understanding creates better experiences. I'm Chris Ledford, and today I'm sitting down with someone who's been doing something many in healthcare haven't figured out yet: how to empower patients, even when they're navigating complex information about their condition and care.

Anna Subrizi, Bristol Myers Squibb Senior Director of Patient Empowerment: Chris, thank you so much for having me.

Chris: Thank you for being here. Anna is a pharmacist by training and a patient advocate by conviction. She leads patient experience at Bristol Myers Squibb and was part of the co-creation of Universal Patient Language — also known as UPL. Anna, you've framed patient communication as a story across four acts. Take me through them in your own words.

Anna: The first is the problem. In healthcare, we often assume that patients understand more than they actually do. When I was working early in my career, I started working directly with patients every single day. And in that, you see that it's actually healthcare that's failing patients — not patients failing to understand the information they're given. We need to start communicating in a way that patients can actually understand, whether it's about how to take their medication, what their insurance is covering and not covering, what follow-ups they need to do, or even just what's happening inside their body.

I'm very fortunate that at BMS, I get to work with a team that solely focuses on empowering the patient and their experience. What we do on my team is invite patients and caregivers to come tell their story through our Share To Inspire program. We also have our Patient Voice team, which connects those patients across our business so we can hear their genuine and very human conversations and insights — and work better as a company. And then we have the Universal Patient Language program, which helps us take the conversations we've had with patients and put them into action so we can create content that patients not only can read and understand but hopefully empower them to make better healthcare decisions.

The goal of all of this is thinking about the future — a place where every patient, every caregiver, and every person can actually understand the information given to them and make easier healthcare decisions as a result.

Chris: This is a powerful reframe — the idea of the system failing the patient and not the other way around. When we talk about patient empowerment, what does that actually look like in practice?

Anna: When we're talking about patient empowerment, organizations often get confused and think that patients want more — more resources, more tools, more information, more words, more pictures. Empowerment isn't about always giving people more. It's about making sure the information we give them allows them to make the decision they need to make.

For me, patient empowerment means that a patient can leave a conversation, leave their appointment, go to a website — and walk away genuinely understanding: What's happening to me? What are my next options? What steps should I take from here? So they make the best decision to get to a healthier place.

I always come back to one of my first jobs, working with patients and caregivers. We'd always ask at the end of the conversation, “Do you have any questions?” Half the time, people would say no — not because they understood everything but because they didn't know what to ask. You don't know what you don't know. And then you'd talk to them a week later and find out they'd left that experience confused and unsure of what they were supposed to do.

We have enough information out there. Anyone can go to websites and find it. But are we giving people the right information so they can make the best decision — in a way that's actually understandable to them?

Chris: The most important distinction — between information and understanding. And we're missing the patient in that equation sometimes. At what point did you realize this was a problem — that we were failing as communicators?

Anna: I don't think it was one distinct moment. It was hundreds of small, different touch points that made me realize we could do better. Let me turn it back to you — have you ever gone to the doctor and left and forgot 80% of what they said?

Chris: I forget what people say to me all the time — let alone what a doctor might say to me!

Anna: Almost every time I go to the doctor, I walk out thinking,“I should have recorded that conversation, because I don't remember half of what was said.” There's so much information given at once that you're overwhelmed. Imagine being told about something really serious — a very serious illness — with fear and anxiety running through you. And even that "why me?" moment. Why is this happening to me?

This is how I know the way we're communicating is failing. We put all the responsibility of care and understanding and researching and paying the bills and navigating extremely complex health systems solely on patients and caregivers.

No one goes out there and says, "Today I want to make sure this is really hard to understand." Everyone is trying to do their best. Some of the most committed individuals I have ever worked with are in healthcare. But sometimes it just unintentionally happens — for various reasons.

One is that in a scientific world, bringing language down to be more plain can be perceived as dropping it too many levels. Some people don't want to be spoken to at a fifth- or sixth-grade reading level. So we want to make sure we strike the right balance between being scientifically accurate and capturing as many people as we possibly can — universally designing, in a sense.

At BMS, we teach all of our colleagues to understand Universal Patient Language and what our principles mean so they can infuse it into their work. We also build tools and resources that the company can use so we can continue to meet patients where they are — because all the tools are built with patients. We co-create with them.

Another opportunity for organizations is how they adapt existing content. Many take something they've already created and gently modify it to reach a different audience. That isn't always the right approach. We believe deeply in co-creation and co-design — bringing patients, caregivers, and advocacy organizations in from the start so that we're building the right piece of content for the right audience at the right time. As opposed to taking something made for a healthcare provider, pulling out a word or two, putting in "patient," and calling it patient content. That's another area where we can be more mindful of the content we're creating.

Chris: What a novel idea — if you have a question about someone, ask them what they want. I want to dig a little deeper on that scientific versus plain language angle, because I can see where that could present a problem. How do we navigate that?

Anna: What's important here is that people sometimes perceive it as an either-or choice — and it doesn't need to be. We like to consider ourselves guardians of plain language.

Chris: I love that.

Anna: Keeping it scientifically accurate but still making sure that people understand it. Because if it's too scientific, people aren't able to get through the information — or they need to research 10 of the 15 words in front of them. In our world, why not just give them a glossary with definitions for the words they were going to have to look up anyway? There's a really nice way of bringing it all together — that's what all of our best practices are designed to do. Pull in the scientifically accurate language while also giving people the tools that help them get there faster.

And we partner with our legal, regulatory, and medical teams at BMS to make sure we don't lose the scientific accuracy in the process.

Chris: It brings forward the idea of understanding not just for the patient but for the caregiver — and how important that is. Can you talk about that? Because I know you feel there's a distinct difference.

Anna: There is. Sometimes the caregiver is invisible in the healthcare system. They're there in the room, but they're not often acknowledged.

And sometimes caregivers don't even know they're caregivers — and that can depend on the condition their loved one has.

For example, if someone has a stroke in your family, they become a caregiver instantaneously. It is a very drastic shift, and they understand immediately what position they've been put into. But when you have illnesses that are chronic and long-standing — or a loved one that's starting to show signs and symptoms of dementia — that is a longer journey. And when it's longer, they don't often acknowledge it. They see themselves as a family member, a husband, a wife: "I'm just here for the visit because this is my mom or my dad."

We have to be mindful of that — because those caregivers are often the ones taking the notes, managing medications, scheduling all the appointments, being the emotional support system. And fiercely advocating during difficult conversations.

We have to make sure we can truly empower patients without forgetting that the caregiver is in the room. That could mean creating content for caregivers — not "A Caregiver's Guide" but "Are you caring for someone you love? This resource is for you." And really connecting them to content that can help them through their journey, because their journey is just as hard. Different from a patient's, but just as hard.

Chris: When we get into actually doing this in practice — how do we see this shift in an organization? How do we see organizations respond when they really embrace this approach?

Anna: We're very lucky. At BMS, we've found that we have broad organizational buy-in. At any given time we're working with cross-functional teams across R&D, medical, commercial, patient safety, and manufacturing — because our colleagues genuinely want to show up and make things better for patients. It has really changed the aura of our company. What we like to say is that we're putting the human and our communities at the heart of everything we do. And we have broad adoption of Universal Patient Language and Patient Empowerment across the organization, so that everyone can do their best for our communities, our patients, and our caregivers.

I've talked a lot about the work we're doing. How about you at The Grovery? What are you doing to change how you engage with patients, caregivers, and advocacy organizations?

Chris: I so wanted to have this conversation because creating understanding is so important to us as an organization. Understanding creates better experiences — and that's true whether you're in financial services, healthcare, or life sciences. We focus on creating understandable situations and spend a lot of time understanding our audiences. That's the key in our work. You do the classic focus groups, surveys — all of those things so you can understand what drives people to make decisions, what puts them in situations where they feel comfortable, and ultimately what builds the trust they need to have in the brand they're interacting with. Just like in your work, it's at the core of everything we do.

Anna: I love that — and that starting point, knowing your audience, is what UPL starts with too. Know your audience. It really helps you drive better content. We also have what we call "Empowering Patients" as one of our best practices — and in doing that, it's actually answering the questions and the needs that people have. I love that you're pulling that into the heart of your organization as well.

Chris: It's so important. Thank you so much for joining us — this has been an absolute pleasure. Before we go, I want to give you the opportunity to let everyone know where they can go to find out more about UPL.

Anna: Thank you so much for having me. If you're creating content, or looking to make the experience better for patients or caregivers, go to upl.org. All the information is there — our best practices and tools to help you do so. Thank you, Chris.

Chris: Thank you. And thank you all — join us again as we talk more about creating better experiences through understanding.