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Why real patient centricity is more essential than ever before

Ask nearly any pharma company these days if they’re patient-centric, and you’ll probably get an answer in the affirmative. But dig deeper, and you might find that patient centricity means a lot of different things to a lot of different people. And that some of those who think they have it figured out might actually be the furthest from the mark of real, meaningful patient centricity.

Sharon Suchotliff is an associate principal at ZS Associates and co-author with Hensley Evans, who leads the global patient and consumer health practice at ZS, of Reinventing Patient Centricity: Bringing patient-led business models to life. Suchotliff sat down with Deep Dive to discuss the current state of patient centricity in pharma, some of the common foibles and misconceptions, and how pharma companies can get themselves on the right track.

“I started my career in fashion and luxury lifestyle and I cut my teeth on brands like W Hotels, Marriott, and Mercedes. I understood customer experience, and what a good experience needs to look like,” she explains.

Suchotliff went back to school for an Executive Master’s in Public Health and Healthcare Management and studied with some of the experts behind crafting the US’s Affordable Care Act – the beginning of more than a decade of work on improving the patient experience.

“I started to think, what’s pharma’s role in all this? Why patient centricity in life sciences now?” she says. “Which led me to think about how we can help life sciences focus more meaningfully on people, on patients, and include them as part of thinking about, which products to develop, how to develop them, and what is needed, in a way that it actually has impact for people and the business.”

Why is patient centricity important?

Long a topic of discussion, many events have brought patient centricity to the forefront in recent years. Prior to now, Suchotliff says, pharma has had a run of profitable years and no “burning platform” pushing them to change.

“That’s changing for many reasons,” she explains. “One being consumer behaviour and expectations; people saying, ‘I want what I want when I want it’, and I’m starting to expect that also from my interactions with healthcare and pharma and my treatments.”

And while people might assume that this phenomenon is more common in the US, where direct-to-patient pharma marketing is permitted, ZS has actually found that it’s occurring everywhere.

In addition to changing consumer expectations, regulatory requirements are also starting to reflect an emphasis on patient-focused drug development and collecting experience data. Increased competition makes it more important for pharma to optimise every edge, including patient experience. And, in general, the availability of new data streams creates new opportunities that pharma must explore or risk falling behind.

“Today, we have the ability to collect more data on people, their interactions, their preferences, and we have a technology to analyse it, understand, and even anticipate what people might need before they even need it,” says Suchotliff. “We can anticipate when someone might drop off. We can anticipate when someone might be close to having a catastrophic event. We just need to focus on it.”

Defining patient centricity

In her book, Suchotliff and her co-author, Hensley Evans, define patient centricity as “having an organisational culture, business practices and capabilities that put patients at the heart of decisions, meet patient needs as articulated by patients themselves, and drive business outcomes”. But to help people incorporate patient centric approaches into ways of working, they use the idea of the four I’s – insight, integrate, improve, and impact.

‘Insight’ refers to really understanding what patients need and want and how they live with their condition. Oftentimes what pharma assumes patients want turns out to be off base when they actually investigate by asking the patients.

“We did this really interesting study about a year or two ago where we evaluated patient support services in oncology,” says Suchotliff. “What we heard from people, patients, and caregivers, is that there are lots of services, but what they really want from pharma is ‘with the pill’ offerings, not ‘beyond the pill’. Yet here we are at pharma talking about ‘beyond the pill’ and investing a lot in that.”

‘Integrate’ deals with company culture – making sure that when new insights are gathered, there’s a process to act on them and change practices. And ‘improve’ is the corollary, ensuring that a change in company culture towards patient centricity also leads to improvements in patient experience.

“If you’re asking someone to change their behaviour, you don’t want them to take it as, ‘Oh gosh, one more thing I have to do’,” Suchotliff says. “They have to understand the value and want to change, and the only way that might happen is by a mindset shift. That’s the culture. And in order to truly integrate the insights and improve the experience for patients, organisations also have to build new capabilities and enable their workforce to tap into these.”

Finally, ‘impact’ recognises the reality that if patient centricity efforts improve patient experience but don’t result in business benefits to the organisation, it will be hard to garner sustained investment from pharma companies. So patient centricity efforts must be created to be a win-win for the business and the patients.

Implementing patient centricity

When it comes to putting patient centricity into practice, Suchotliff says, there are many obstacles pharma companies run up against. One, interestingly, is that people often think they’re already doing enough in patient centricity.

“We just ran a study on enabling patient centric transformation amongst marketers,” says Suchotliff. “What we found is that the more patient-centric somebody believes they already are, the less likely they were to be excited about corporate changes to integrate patient centricity into business objectives.”

In a way, patient centricity is a victim of its own success as a concept, because the hype around it has created a bit of a ‘boy who cried wolf’ effect.

“As an industry, we’ve been talking about patient centricity for a long time, and at some companies, it really has been more lip service as opposed to real action, and so it might feel like, ‘Oh, not this again’,” Suchotliff explains.

Another barrier is siloing: one part of the organisation might be doing well with patient centricity, but that culture shift hasn’t spread to the wider company. A lack of clarity and understanding about legal and compliance is another thing that can keep people from moving proactively toward patient centricity, especially when it comes to things like using data to better understand patient needs.

“When we ask, ‘What gets in the way of being patient-centric?’ We often hear, ‘Oh, legal and compliance. I can’t legally do this, or compliance won’t let me do it’, but the reality is it’s really about lack of clarity,” Suchotliff says. “Somebody else in your organisation may have done it, but we’re not connecting the dots because there is not an overarching strategy, or an overarching mandate or mission, and so efforts are inconsistent and disjointed.”

Finally, patient centricity initiatives often suffer when leadership changes and the patient centric culture isn’t codified in KPIs or other concrete ways.

“We’ve seen instances where leaders have invested a great deal in enabling patient centricity at their organisations. Then as that leader moves on, because there haven’t been KPIs or incentives put in place, those structures and practices go away. Some of these very same companies ride like a pendulum swing, and today, are now again, back at trying to figure out how to enable patient centricity at their organisation,” explains Suchotliff.

The solutions to some of these problems are evident: organisations must increase internal communication and share best practices, codify their patient centricity culture with documented processes and KPIs, and be open-minded – at every level – about the possibility that their current patient-centricity efforts might not be enough.

Measuring patient centricity

Towards that end, it’s important that organisations are able to measure and quantify the status of their patient centricity efforts. ZS has developed the Patient Centricity Index to help them assess companies’ efforts on four axes: leadership and culture, structures and practices, data analytics and tech, and cross-industry collaboration.

“Within each one of these dimensions, there are various elements,” Suchotliff explained. “There are different subcategories that we look at across the spectrum of one to five, one being not very patient-centric, and five being incredibly transformational, which we haven’t seen any organisation quite get there yet.”

In doing assessments on this index, Suchotliff says her firm has found some interesting trends.

“What we typically find is that there seems to be this optimism gap, where folks in more senior positions believe the company is more advanced than people at middle management or doing the work on the ground, believe that the company is,” she says.

While you might expect certain trends related to company size, location, or area of expertise, Suchotliff notes that, in reality, those correlations are few and far between.

“We often get the question of, ‘Well, companies in rare disease are more patient-centric by design, right?’” she explains. “When you look at the capabilities and the behaviours, that’s not always true.”

Since they started doing assessments with the index, Suchotliff says the industry has been improving.

“The area where we’ve seen the most progress between 2018 and 2021, is in leadership and culture, which makes a lot of sense, since that’s where many might start,” she says. “The area where we’ve seen the least amount of movement is in cross-industry collaboration, but my hypothesis is that will change because partnering is going to become increasingly more important as you move to an outcomes-based world.”

Partnering for patient centricity success

That last point is an important one, Suchotliff says, because the nature of the patient experience is that it’s not just an experience with one stakeholder. A recent global study by Suchotliff’s team, of 100 individuals (patients, caregivers, and patient advocates) who have received a cell or gene therapy or might be eligible for one in the near future, gives an example.

“One of the biggest gaps that we found is that pharma really focuses on this one sliver of the experience, the actual delivery of the treatment itself,” she says. “However, when people needed the most support was actually even earlier on. Understanding what is done in gene therapy – What is this thing about to do? What can I expect? The reason why that matters is because we saw that for about 30% of people, not having that understanding delayed treatment. If you think about certain conditions, in cancer or paediatric rare disease, that time is precious.”

Pharma needs to partner with other healthcare stakeholders like providers and payors – as well as with their competitors – to make sure every part of the patient experience is looked after, in a seamless way. And when it comes to technology, that means interoperability.

“Think about an ATM,” says Suchotliff. “Twenty years ago, in order to take money out of your account, you needed to walk into a bank with a slip of paper and say, ‘Hey, can you please access money from my account?’ Today, you can be in the middle of nowhere and find an ATM and within seconds, access funds from your account. How did this happen? By an agreement in the banking industry that banks will share certain data. Not all the data, but they’ll share your name, your account number, and how much money is in your account, so we can make those transactions happen. How powerful would it be if we as a pharmaceutical industry could share certain data that would help us understand what’s going on with someone’s experience and therefore be able to improve that?”

The final piece of the puzzle is social determinants of health because people’s healthcare experience isn’t limited to experiences with the healthcare system.

“Lifestyle, social factors, and social determinants of health account for about 70% of an individual’s outcomes,” Suchotliff says. “There are some pretty stark examples of the implications of things like household income on an individual’s health. We share a story in the book about Alec, a 26-year-old restaurant manager with type 1 diabetes. He had just aged out of his mother’s insurance and couldn’t afford to pay for insurance on his own, which led him to start rationing his insulin. Alec died less than a month after going off of his mother’s insurance plan. We need to be aware of the factors surrounding people’s lives if we’re going to improve health outcomes. Partnering with others in the ecosystem will allow us to do that.”

Moving in the right direction

Pharma is talking about patient centricity a lot these days, and that’s a great step forward for the industry. But one of the industry’s challenges will be making sure that companies are walking the walk as much as they’re talking the talk.

“Oftentimes we hear from clients that they get a bit uncomfortable when they think about business outcomes as they relate to patient centricity,” Suchotliff explains. “I think the key thing to keep in mind is that we’re not focusing on patient centricity in order to advance the business. However, there is an absolute connection between improving the experience for people, improving their health outcomes, and your business outcomes.”

For all those reasons, Suchotliff thinks the industry is moving in the right direction. That point was driven home for Suchotliff by a conversation with one of ZS Associate’s advisors, a former C-suite executive at a major global pharma company.

“We [asked him] the question of, ‘How do we get CEOs to care about patient centricity?’ He said that it’s when the board of directors starts asking for it. It’s when shareholders start to demand it,” she says. “I think given the continued movement towards value-based care, we’re not that far off. My hope is that we will, within the next ten years, get to a place where we look at the impact of our investments on health outcomes – what we call patient outcomes impact, or POI – just as much as we look at ROI.”

About the interviewee

Sharon

Sharon Suchotliff leads ZS’s patient centricity work in the US. She brings more than 15 years of marketing communications experience in and outside of healthcare, fused with a background in public health. At ZS, Sharon helps companies develop strategies and build capabilities to further patient centricity and meaningfully incorporate the patient voice into business decisions. Sharon holds a BS in public relations from the SI Newhouse School of Public Communications at Syracuse University and an Executive MPH from the Mailman School of Public Health at Columbia University.

About ZS Associates

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ZS is transforming global healthcare by driving toward a connected ecosystem. We leverage the power of data, science, and technology to make more intelligent healthcare decisions and deliver innovative solutions to improve health outcomes for all.

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