While the pharmaceutical industry has accepted the importance of digital, implementing it in patient solutions remains a challenge. Manufacturers should prioritize patients’ needs and understand how they can evolve over the course of their treatment journey to offer them accessible and useful solutions, according to industry experts at a recent webinar sponsored by Reuters Events.
One trend within the digital space is tied to the change within the health care landscape and its digital support methods. Most would agree that this is a positive development. But according to Paul Fu, M.D., chief medical information officer at City of Hope, a cancer research and treatment organization, as well as a research center for diabetes and life-threatening diseases, “I think that one of the challenges of being a health care system is that the technology is moving faster than our ability to handle that rate of change. We see that with our patients.”
The organization, which includes a network of community clinics in the Los Angeles area, merged with Cancer Treatment Centers of America in February, “so now we’re trying to think about how we leverage our footprint across a much broader geographic area,” he explained. “But with that also comes the challenges of dealing with care delivery across multiple social and economic strata, and how do we make sure that we’re providing equitable care to all of our patients? They’ve got cancer; they’re coming to us. We’re typically a second-line or later therapy provider, not typically a first-line therapy provider, and so the level of engagement with our patients is very high, and many of them are very motivated, and many of them are coming with things that are connected to Apple HomeKit or other digital monitoring devices.”
The challenge for City of Hope, he said, “is how do we use this data and information in such a way that we are providing and supporting our patients the way they need to be supported, but at the same time, we are not disrupting our existing workflows too great?” The organization is “very EHR centric, which means that our patient staff lives within the workflow established in the EHR, and every time we have to force them to jump out to go to another portal site,…it represents a disruption, and we’re trying to figure out how do we balance that while empowering our patients and keeping the focus on their care but at the same time not exacerbating the burnout that a lot of our health care providers are experiencing right now.”
Another trend is in the area of integration, stated Desiree Priestley, executive director of patient experience and support at Otsuka Pharmaceutical Companies, specifically in “trying to make sure that APIs [i.e., application programming interfaces] can connect; that it’s seamless, that the experience for patients is very easy. That’s a good trend that I think we all experience whether it’s in retail or anything else, so patients are expecting that level of integration, and that’s not always easy to achieve, but it’s definitely an aspiration.”
Expanding on that, Paul Upham, head of smart devices at Roche/Genentech, said that the company is “seeing a significant use of digital in our clinical trials and seeing our clinical trials as an opportunity during drug development, both to better engage with patients who are participating in the clinical trials but also, frankly, as a place to experiment and learn. In the same way that we’re learning about how the drugs are working and safety and efficacy, we’re deploying these digital tools to learn better about health care teams, the patients and what existing tools and systems we need to integrate into. And maybe, finally, we’re also finding that the digital tools are helping us reach patients and have them participate in clinical trials and engage in situations where normally maybe those patients wouldn’t have been able to participate before. So it’s really helped us extend access not only to products but access to clinical trial environment and get a more diverse patient population.”
At City of Hope, “we do many, many clinical trials, and we have many trial sponsors, and I think that’s one of the challenges that we have is that many of these trial sponsors have their own frameworks that they’re coming with, and we have to figure out how to accommodate that for our different patients while also supporting our own,” declared Fu. “We are very patient-journey-focused; a lot of our work from a strategy and tactical level is focused on how do we ensure that the patient has the smoothest seamless journey through the City of Hope health care system,” regardless of the site of care.
The organization, he said, wants to make sure that it is “taking care of [patients] in all different aspects of their journey through City of Hope. A lot of that involves clinical trials. We have almost 2,000 clinical trials active between internal sponsored ones and partnered ones. Many of those come with a separate data-collection tool. Our patients have a trials tool, but then if they are receiving regular care from us as well, they have the City of Hope tool that they have to enter data in. If they also have a primary care provider, then they may also have another tool that that health care system is providing them. So going back to that patient-centricity focus, is there any way to do that interoperably?”
How Can Solutions Serve All Patients?
Moderator Ella Balasa, a patient advocate and engagement consultant and a person with cystic fibrosis, observed that “overall patients are playing a greater role within our health care, and we’re looking for this enhanced support, so it’s important to understand these needs and ensure that that’s provided and setting us up for success.” So how, she asked, could companies make sure that digital solutions support not only a single patient’s journey, but also those of a larger population?
According to Agata Wejman, patient innovation senior director of legal and compliance solutions within Novo Nordisk’s international operations, “that’s a big topic.…I think that we all are already working on the nitty gritty of solutions of interfaces, frameworks, making them interoperable. In this type of complex and very novel world that we are all navigating, it’s super important to always be able to come back to the beginning of the whole story, meaning the problem that we are trying to solve. And the problem starts with the patient; it’s the patient’s problem.”
In order for companies to develop a meaningful digital solution, they must start with an in-depth understanding of that problem. But challenges exist, including “how we collect insights, how we understand the patient, how we meet the patient not only in the medical framework of where we are used to operating in terms of understanding different patient profiles in terms of their medical condition perspective but how we are also able to navigate the environment of patients looking for ease of use.”
In addition, said Wejman, “it’s very important to understand that all those digital solutions and the problems of the patient within their journey in a given health condition cannot be solved by one individual ecosystem player.” All stakeholders, she asserted, should contribute to discussions around understanding what the patient problem actually is and how it can be resolved.
Priestley agreed. “I think patient journey is where everything starts at the beginning. You have to deeply understand the journey, and journey work should be refreshed every now and then as well.” For example, a patient journey in pre-COVID-19 pandemic most likely is quite different from one in 2022.
Besides an understanding of the problem, it’s important to recognize possible opportunities within patient journeys and “try to anticipate those needs. And then co-creation comes into play. Even from just a user experience perspective, validating that those are the problems you’re trying to solve, understanding that, is digital really the way to solve that problem, or is there something else? But it’s bringing all of that together, and it takes a lot of different stakeholders to come together and make sure that you’re addressing it the way that’s best to do it,” including legal and compliance representatives.
Fu explained that City of Hope has “patient and family/caregiver advisory councils; we run them in English and Spanish. We leverage them for a variety of different reasons. Traditionally it’s been, ‘Hey, we want to do this from a service perspective — what do you think?’ Or ‘Hey, we have some patient-education materials that we’d like you to take a look at and make sure that they actually are patient-education materials that people would use and be interested in.’ We’re starting to do that more with digital health tools.”
“I think that one of the challenges we’ve acknowledged…[is] it’s such a broad population base that you always have to worry a little bit that the perspective that you’re getting is a perspective that may not be representative of the entire population,” he noted. “We know that some people are comfortable with a lot of complexity, and some people would rather have things simplified.” With many frameworks, “you don’t have a lot of capacity to on-the-fly flex between one or the other, so it’s a matter of how do you make the most number of people happy in knowing that by making the most number of people happy, you’re going to make some people unhappy because of the limitations as well. So we definitely try to involve our patient communities as much as possible to help us design the optimal experience.”
“Any type of solution starts with listening to the end user. This is very much in the nature of our business in pharma from the get-go starting with clinical trials,” added Wejman. “In digital, we have the opportunity…to scale this even further, to go beyond…with not only the solution but also the opportunity to collect feedback, to collect comments and to effectively co-create with much broader populations. There are different ways to do that, and here in legal and compliance, we are helping navigate also all the barriers related to this kind of more broad exchange with patients beyond the dedicated small focus groups.…This is an iterative process, [and having] the feedback coming in on a continuous basis is absolutely crucial. And then we have to learn to navigate the different channels, different tools that are available, which are potentially rather new to the pharma sector.”
How Can Tools’ Success Be Measured?
With so many tools available, companies must be able to understand whether they are successful. Doing so, said Priestley, “depends on the problem you’re trying to solve, on where you are in the journey and what your solution is solving. It could be adherence — that’s always a common one for digital solutions. But it might be decreasing the time to first fill.…Customer satisfaction has to be there as well.”
Continuous feedback is also critical: “You have to test and learn and iterate. This is not something that you’re just going to launch and let go for a long time.”
Upham agreed that listening to patient feedback is “critical.” Instead of “return on investment,” Roche/Genentech is introducing the concept of “return to patient — how much value are we returning to the patient with all this effort to create these solutions?” Companies, he said, should re-evaluate whether they are delivering on the patient problem that the solution was designed for. “Have we learned something new? Has the problem changed? Has the patient population changed as we’ve gotten more experience? I think all of those things are things that are important to measure to say what is the next version. Is there a new problem to solve? Are we growing or expanding, or are we shrinking, and it’s time to kill something that is not delivering value anymore? There’s a whole host of those types of metrics.”
However, patients must adopt these solutions, pointed out Priestley. “That means that there have to be marketing efforts put towards it and funds and an effort to really figure out how to create awareness around it. I think awareness creation is always a challenge in the patient support space.…We’re trying to reach broader populations, so how do we, even from a marketing perspective, meet them where they are, just to let them know that this exists and that they can use it? Because they keep telling us they want it, but if they don’t know it’s there, then we can’t get it to them.”
Sourcing potential partners and solutions can be challenging “because there are so many possible technical partners for different types of solutions,” declared Upham, so companies “have to define the problem you’re trying to solve. And then you need to be able to look at all the different problems that your different teams are trying to solve. At Roche and Genentech, we have hundreds of products and lots of services associated with all of those, and there isn’t one single tech partner that we’re going to work with to deliver on all those services because they’re all quite different.
“In each country and with each problem that we’re trying to solve, there are unique legal, regulatory and technical questions, and so many of those come into play,” he continued. “I think as we’re getting more mature in understanding how to better deliver and integrate digital solutions, we’re seeing where the opportunities are to take more of a platform approach — for example, to say, ‘These 10 programs or these 10 problems that exist across different patient populations might be able to be solved with one platform solution that has a few tweaks here and there.’ I think we’re still learning about that. We’re seeking partners who have flexibility, who have experience — often, it’s valuable to find partners who have global experience and can help navigate some of the digital requirements in different countries. But that’s not always the case; sometimes we have a very country-specific solution, and it makes sense for it to be that way.”
According to Priestley, “good tech partnerships are always evolving. There are just so many out there, so just staying on top of it, on top of the latest capabilities, is difficult.…But then also, vetting it through and making sure they can deliver on what they’re saying because there are a lot that say they have the capability, but they may not have done it before, so you’re essentially helping them build that capability out as you partner with them. So that’s been an interesting learning. It’s not necessarily bad, but a lot of tech companies say they can integrate with everything, but they may not have done it, so it takes longer to actually get that integration going.”
Wejman stressed the importance of mutual trust between partner companies. “It’s not a matter of being slow or being fast or more modern or less modern. This is about building mutual trust, both on the side of solutions being provided, but also on the side of a good understanding and sense of comfort with the business models,” which should be continuously evolving.
Ensuring wide patient engagement may be easier said than done. “I think that’s an ongoing challenge,” declared Priestley. At Otsuka, “we absolutely strive to make sure that we can create awareness in every facet of the country.…It’s a challenge to reach patients in and of itself, let alone the health inequities that exist out there. It takes conscious effort, it takes a lot of partnership with your marketing team, and then you just have to put tactics in place to try to see if you can reach more and more.”
While these solutions are “all about individualization of the journey, of the patient experience,” it’s key to understand that “different solutions will not necessarily address” all patients, stated Wejman. “It’s quite unlikely for this to happen. So I think it’s super important to account for the fact and understand that you invest or reinvest time into solutions that are hopefully the broadest and help address the broadest group of patients with the biggest impact, but then also realize what we are able to do for the remaining groups of patients who will not necessarily benefit from these solutions.”
When patients can identify social determinants of health issues, such as food insecurity or travel problems, City of Hope “can help identify and find resources to support them,” said Fu. “But if they don’t give us the answers because they don’t have the digital tools, they don’t have the digital literacy to use the digital tools to do it, then we’re kind of stuck, and we don’t know about it. It’s kind of like a Catch-22. We’re able to support and provide services to our patients that are able to engage with us at one level, and then we have to think about…patients who don’t want to engage with mobile apps; they don’t like mobile apps. They may be in a situation where they have unlimited text messaging, but they don’t have unlimited data, and so we have to figure out, is there a way” to support those patients? “We spend a lot of time thinking about that.”
“I think that’s a really important point,” responded Upham, “and it also goes to how do we as an individual pharma company integrate the types of ways and channels we have of interacting with our patients because, to your point, for some programs, a mobile app or even a web portal may not be feasible, may not work for those patients. We have a significant number of patients who still interact with us telephonically. And then the new challenge is how do we make sure that we know that the patient who’s interacted with us over the phone, who’s now maybe interacting on the web portal or through these other different channels, how do we make that a common, seamless experience for those patients because their needs and their ability to interact with us also change over time? And I think that’s one of the big challenges we face is how not to annoy the patient by asking them the same questions every time they come to us through a different channel. Simple things like that, we’re still looking for good technology solutions that can help us there, not all unified around an app but through all these different methods. We still have health care providers who interact with us via fax machine. These are the realities of the different types of resources that are available in different populations.”
So, asked Balasa, where is the balance between digital and hybrid models of service and support?
“I think it’s important to understand that with all the focus we have on digital solutions and all the intensive work that we are putting into how to solve this patient problem in the digital environment, it’s pretty much clear that we will continue to live in a world that is a combination of digital and hybrid or fully offline models,” maintained Wejman. “It’s important to solve for patient problems, make sure that the patient is able to access their care, to continue on their journey in a seamless…way. Sometimes the problem will be that the patient doesn’t have access to the digital solutions, obviously, but sometimes it will be a much more complex situation, with different personal preferences or quality of care indications, a different situation for the patient at that point in their life. And, of course, depending on the segment of the patient journey, that situation will also look different. So again, this is a complexity, but I think we are in a world where we are solving for a seamless journey across digital and real world if we really want to meet the patients’ unmet needs.”
For example, she said, “there’s often this understanding that younger generations, Gen Z and so forth, are all about easy access, easy experience.” But because of COVID-19, people of younger generations are “feeling alone in their disease and actively seeking — even more than older generations — personal contact with, for example, their doctor….The patient and the future [are] about adaptability and juggling between the worlds.”