If anybody knows about the importance of a patient-centric approach to life sciences, it is Sharon Suchotliff.
As Associate Principal of Patient Centricity at ZS and co-author of Reinventing Patient Centricity: Bringing Patient-Led Business Models to Life, Sharon has helped companies across the globe develop strategies and capabilities to better serve patients and support the business.
In this video interview, she discusses how accelerating competition across different therapeutic areas, including the trend towards more targeted therapies, is driving patient centricity in healthcare. Drawing on specific examples and case studies, Sharon dives deep into the topic and how ZS has been benchmarking patient centricity since 2018, noting that despite the majority of firms being recorded as making advances, only incremental progress is currently being achieved.
Key to driving substantive progress, Sharon says, is demonstrating the link between investment in patient centric strategies and business impact – in other words, showing that returns can be made. To this end, ZS is developing a Patient Outcomes Impact metric, which aims to prove that important business case.
The conversation ends with some advice for companies that are still relatively early in their patient centricity journeys. Here, Sharon offers three top tips that firms should consider.
Rebecca Willumson: Hi there. My name's Rebecca Willumson. I'm the publisher of Fierce Pharma. And I'm here today with Sharon Suchotliff, associate principal of patient centricity at ZS and co-author of Reinventing Patient Centricity: Bringing Patient-Led Business Models to Life.
Sharon, thank you so much for joining me.
Sharon Suchotliff, MPH: Thank you so much. Such a pleasure.
Rebecca Willumson: You'd be hard pressed to find a company in healthcare today that doesn't talk about patient centricity. It's not a new concept. So tell me why are we seeing an increased focus today?
Sharon Suchotliff, MPH: Rebecca, what a great question to kick us off. And I will say this is actually one of the main reasons that we wrote the book because the forces are accelerating and the reality is that the things that are driving an increased focus on patient centricity have been around for a long time, it's just now that they're accelerating. So let me give some examples. We're seeing competition increase in every category, every therapeutic area, even in rare disease. And we're talking about competition, not just in the commercial side, not just for share, but also on the clinical development side for having the right investigators that can reach a diverse population or making sure that we can reach patients who will participate in that trial.
We're also seeing that life science and pipelines are becoming much more targeted therapies, rare disease, cell and gene therapies. In fact, I read recently that right now there are over 3000 cell and gene therapies currently in clinical development. And so that means that we have to know our patients, we have to know the people, we have to understand them much more deeply and bring them into the business. And by the way, regulators are saying that we have to. They're strongly recommending that we get patient experience data and understand the patient experience and what's important to people as we're conducting clinical trials. And there are a lot of pressures from payers, both in the US and from HTAs, to show value beyond clinical benefit. And so that means we have to put in the mechanisms in place into our businesses to be able to listen to patients.
Now, I'll give some examples of what happens when we don't do that. This one example is actually a really good one. It's the ProtecT prostate cancer study. I don't know if folks may have heard of it. Now, this study had a lot of trouble recruiting patients and they couldn't figure out why. And finally they decided, okay, why don't we ask people, ask patients who were participating and patients who've said no. And what they found is that there's this one part when they talk about the protocol that says watchful waiting. And when people heard that, they heard, "Oh, you're going to watch while I die?" Exactly. And this is something they could have anticipated had they asked somebody. Once they changed that language and made it active monitoring, which is actually what was happening during this trial, the study saw a 75% increase in successful recruitment. And so if we do more of that, if we bring people in, we can avoid these events.
I have another example from a patient advocate and a pretty incredible gentleman by the name of Kyle Bryant. And he lives with a disease called Friedreich's ataxia or FA for short. It's a very rare life shortening degenerative neuromuscular disease. Now, Kyle shared a very interesting story with us where he was doing some work helping a pharmaceutical company with their development, and they were specifically focused in FA, and they were very excited to have him come in and they were having this meeting with him and they said, "Look, Kyle, the next thing we're going to do is we're going to make the pills smaller because we know it'll be easier for you to swallow." And Kyle said to them, "I'm so glad that you reached out when you did because please don't do that. Please do not make the pills smaller. Because as I lose feeling in my throat, if the pill's not really big, I'm not going to know whether or not I swallowed it and that's very important to me."
So this company was able to save a lot of time and money by consulting Kyle and making sure they didn't go down that road.
Rebecca Willumson: Wow, that's fascinating. That's great. So all this being said, are companies, are they making progress?
Sharon Suchotliff, MPH: They are making progress, some. So since 2018, ZS has been benchmarking the patient centricity maturity of life sciences companies. And when we last looked at the data in 2021 what we saw was that 85% of companies have advanced their capabilities, and we're talking about having a strategy, we're talking about having infrastructure, looking at the data, training their people. So 85% of companies did in fact progress. I think the real challenge is the progress that we've seen is incremental. Is that a problem? Maybe? What we're seeing is that 85% of companies have progressed. Is that progress significant? I would say it's more incremental.
And the question then becomes, is that a problem? I actually think it's okay. What we're seeing is slow but steady progress. And steady progress means lasting change. It's very hard to make drastic changes stick and last. And we've seen some examples of this. And the reason that I say slow and steady is actually okay because leadership within life sciences changes a lot. And some of the things that we've seen is that when, for example, one company had invested in having a COE in patient centricity and they were doing excellent work in clinical development. They were having patients review the protocols. They had set up mechanisms through which they can look at PROs and value which PROs are the right ones, but then progress takes time. And so when leadership changed, the funding for that group went away. And so those are the types of things that we want to avoid. So if we're making slow and steady progress, I think that's okay.
And I think the other key factor to consider is not to forget about culture. Many companies will invest in capabilities as we saw with the example I just mentioned, but they haven't quite made the investment to shift the mindsets. And what then happens is you can have great capabilities and the right SOPs, but people are not going to do it. They're not going to change their behavior unless they believe, unless they have a reason to. And so there are some things that companies have done or are doing to help shift those mindsets and they can be small and they can be big. One company has a metric which they call a return to patient, where before starting an initiative, folks are asked to reflect on a series of questions that help them understand, is this thing that I'm about to do going to have an impact for the people that we seek to serve, our patients? Many companies such as Ipsen for example, have sophisticated training programs around patient engagement and what makes a good insight and what is an insight and what is a representative insight.
Other companies like Boehringer Ingelheim for example, will start every meeting with what they call a patient minute where someone shares a patient story or they have a patient video where the individual talks about the impact it's had in their life. And they have things like guiding questions for the annual planning cycle. So as you're thinking about what you're going to focus on for the year, there are questions that help you reflect on what is actually patient-centric, what's going to have meaning for the people we serve? And then those questions are reviewed, the answers to those, and the progress is reviewed at the end of the cycle, at the end of the year to say, "Hey, did we actually do the things we said we were going to do?"
Rebecca Willumson: So from your perspective, what do you think is getting in the way of advancing patient centricity faster and more meaningfully?
Sharon Suchotliff, MPH: A lot of what we see is fear and trepidation around understanding the relationship between business impact and being patient centric. The reality is that unless we can make a connection between the investments we make in patient centricity and some sort of impact, that investment's going to go away. I've seen it multiple times. One company had a really impressive global program where they were in the community, they were helping further testing, further awareness, further treatment of a certain disease. But because they didn't have measurable KPIs that align to priorities for the organization, that funding quickly went away.
And as you think about the fact that in the US and all over the world we're slowly continuing to move towards value-based care and different types of alternative payment models where it's really important to understand how the investments we make are affecting patient outcomes, how we drive value for patients. And so we have to change the way in which we are measuring. We have to be able to demonstrate impact.
And one of the things that we're doing at ZS currently is we're working on developing a metric, a way to measure this, we're calling it Patient Outcomes Impact. Because you ask any leader within life sciences, "Hey, what's the ROI on your investments?" And they'll be able to tell you, but if you ask the same question but instead probe around, what's the impact for patients? Many won't know. Now, what we're seeing is that many companies are already doing this, they're already measuring the impact on patients, they're just not calling it that. I'll give you an example.
There was a pharmaceutical company that wanted to strengthen their relationships with physicians, with their healthcare professionals, and they're specifically focused in a chronic progressive disease, and this disease is one where the diagnosis is a diagnosis of exclusion and therefore takes at least two to three years and a lot of misdiagnosis until you get there. And so this seemed like a problem that the company could help solve. They focused on developing an educational program for physicians, and their goal was, "Hey, can we see if by building our relationships we might be able to improve share?" And guess what? They did. Then they said, "Well, what if we take it a step further? What if we try to look at did we improve things for patients? Have we been able to improve the time to diagnosis?" And what they found was that they were, they were able to shorten that time to diagnosis. And for someone living with a progressive disease without answers, it's quite overwhelming. And so this made a big impact for patients. People were able to get that diagnosis faster, start on treatments faster, ease their worries.
And so patient outcomes impact is actually something we should all strive for as an industry. And my hope is that we'll hear more and more companies thinking not just about the ROI, but also the POI.
Rebecca Willumson: So to close out, for companies that are still very early in their journey, what advice do you have for them?
Sharon Suchotliff, MPH: For companies that are just starting out, there are probably three things that are critical. The first is being able to demonstrate the business case for patient centricity. You have to show your leadership the opportunity cost of not engaging with patients and what could be the benefit of engaging with patients. And one of my favorite examples comes from Janssen, they published this not that long ago. What they've been able to figure out is that for $100,000 of investment in patient engagement, and this is on the clinical development side, they can increase the net present value or the expected net present value of the program by more than 500 times. And for them, that's like shortening the clinical trial by about two and a half years. So we can think about what the value is there. Data like that certainly got their leadership on board.
And that's the second part, get your leadership on board. What we see at a lot of companies is that there are motivated individuals who will do pilots, proof of concepts. But the thing is, if you're always doing pilots and small proofs of concepts, that's where you're going to stay. You've got to quickly get to that impact, get your leadership on board, because for change to happen it has to come from the top.
And the third is make it easy. Make it easy for individuals to engage with patients. A lot of what I see getting in the way of life sciences companies engaging with patients is logistics. And we've seen many companies, and I think Genentech does a phenomenal job at this, in making it easy, creating a patient council. Where you can very easily engage with a group of diverse and representative individuals to get feedback on your program, to get input into your protocol, to talk about your messaging, to bring people in. And we have seen that be very effective in helping people not just talk about patient centricity, but actually behave in that way.
Rebecca Willumson: Well, that feels like a great place to end. Sharon, thank you so much for joining me today. And as a reminder, the book, Reinventing Patient Centricity: Bringing Patient-Led Business Models to Life is available on Amazon.