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Experience Design Research in Healthcare with Tiffany Mura and Erica Devine

Experience Design Research in Healthcare with Tiffany Mura and Erica Devine

Healthcare organizations are investing more in human-centered design. Here’s how UX design principles are changing the patient experience.

Healthcare organizations are responding to the UX design boom by focusing on the patient experience. What is driving this shift? Why did it take so long? How does quantitative research align with qualitative research? 

In this episode of Awkward Silences, Tiffany Mura, Senior Vice President of Health Practice Lead at Mad*Pow, and Erica Devine, Associate Director, Patient Experience Strategy and Support at Otsuka Pharmaceutical Companies (U.S.), discuss patient-centered design in healthcare research. They explore the complexities of the healthcare ecosystem and share key aspects of their research methodologies to help paint a picture of how research can help improve the overall patient experience.

In this episode, we discuss:

  • Why healthcare companies are shifting towards a patient-centric approach
  • Healthcare research methodologies  
  • ePatient experience trends in the healthcare industry
  • The benefits of a patient-centric approach  

Watch or listen to the episode

Click the embedded players below to listen to the audio recording or watch the video. Go to our podcast website for full episode details.


  • [00:03:48] Digital health companies are disrupting the industry
  • [00:11:38] Erica shares data collection procedures and discusses research trends
  • [00:14:28] How do healthcare researchers find the right people to talk to?
  • [00:17:00] Tiffany explains standard healthcare research methodologies
  • [00:26:39] Ethical considerations are central to planning and recruitment
  • [00:37:02] How to use qualitative data to better understand the patient experience
  • [00:40:21] New regulations will force companies to measure patient-reported outcomes

Sources mentioned in the episode

About our guests

Human-centered design specialist Tiffany Mura is a senior-level brand marketing strategist with a range of experience in multiple healthcare sectors. She is currently the Senior Vice President, Health Practice Lead at Mad*Pow. She has a Master’s degree in Business Administration and a Bachelor of Science in Sociology from Penn State University.

Erica Devine is a practicing pharmacist with over sixteen years of experience building and overseeing teams. She is currently the Associate Director of Patient Experience Strategy at Otsuka Pharmaceutical Companies. Her work centers around business development and customer experience strategy, among other things. Erica has a Doctor of Pharmacy degree from the University of Pittsburgh, licensed to practice in NY and PA.


[00:00:01] Tiffany Mura: The other thing that's super important too, and why it's important to work with folks who understand research in this space is you want to make sure that the study design isn't further harming the patients. A lot of times, it's not just about the privacy, it's about what the patient's experiencing with the particular disease that they may have at this particular point in time.

[00:00:22] Erin May: This is Erin May.

[00:00:24] John-Henry Forster: I'm John-Henry Forster, and this is Awkward Silences.

[00:00:29] Erin: Silences. [laughs] Hello, everybody, and welcome back to Awkward Silences. Today, we're here with two guests, which is always really fun. We have Tiffany Mura, who's the SVP Health Practice Lead at Mad*Pow. We also have Erica Devine, Associate Director Patient Experience at Otsuka.

[00:00:54] Erica Devine: Thank you so much, Erin. I just wanted to get this out of the way. All thoughts, opinions, are my own and don't represent my employment with Otsuka.

[00:01:01] Erin: Today, we're going to be talking about a really fun and interesting and important topic, which has to do with patient experience and how we can use research fundamentals to improve that experience while driving business impact as well. Lots of great stuff to dig into. Welcome, guests. Thanks for joining us.

[00:01:20] Tiffany: Thank you. We're delighted to be here.

[00:01:21] Erica: Likewise. It's a pleasure. Thank you.

[00:01:23] Erin: Yes, thanks for joining. Got JH here, too.

[00:01:26] JH: Yes, I feel like when you mentioned the healthcare experience, everyone listening probably immediately goes to some horrible experience they had at some point. Hopefully, it'd be cool, we can take them through their-- in terms of why that happens and what you can do to improve it.

[00:01:36] Tiffany: Absolutely.

[00:01:37] Erin: All right. As JH was saying, I think we've all had experiences as patients, we've all been a patient at some point in our lives and maybe some of those experiences have left a little something to be desired. Just to kick things off, why are businesses really focusing on the patient experience now and are they doing it enough? Where are we in this journey?

[00:01:58] Tiffany: I think it depends on where in the health industry you're looking at. We're both here today in the context of pharmaceuticals and life sciences. I think there are companies like those in the health systems space, the hospitals, and the health delivery systems that are looking at it one way, and then there's the product companies who are a little bit late to the game.

Really, if you're familiar with the work of Joseph Pine in the Experience Economy, we're very deep into these experience economy at this point. The product companies, the pharma and life sciences companies really became companies as a very product focused journey. They're really starting to try to make the shift to true patient centricity and they're just starting to get there.

[00:02:34] Erica: Yes, I would echo that, Tiffany. I do think the pandemic exacerbated a lot of this much more quickly. I don't think patient centricity as an approach, is a brand-new concept. I mean, we've been hearing about it for a couple decades, but I think the tides are changing in the environment. Tiffany, to what you were saying, our key stakeholders that we work with care about experience, they care about outcomes, and they measure it, and they pay out on it.

For pharma to be able to have these discussions with payers, our government regulators, the people that are providing the care, we have to be able to measure this and speak to those metrics as well. Where we are, I think we have some room to improve because, again, it's very hard to change a traditional approach where it's always been we're product makers, we're drug makers.

Now, we're moving a little bit more holistically to, we do provide medications that treat or mitigate symptoms, but we're also providing an experience for patients. That is somewhere-- that takes time, that takes time to move that chip. I think we're making big strides, but we definitely have room for improvement to get there.

[00:03:48] JH: Nice. Maybe just as somebody who's not super familiar about the industries and the nuances here, which I imagine is true for some listeners, my mind immediately goes to patient experience, I think waiting room. It sounds like obviously there's a lot more categories here that you're breaking down of the life sciences and the pharma side versus the services side. Can you maybe just give a little bit of context on-- when you're using those terms, what experiences fall into each just to help make it tangible for folks?

[00:04:10] Tiffany: Absolutely. As the Health Practice Lead at Mad*Pow, I'm looking across the entire industry. You've got a number of different sectors within the industry. You've got the ones that we're dealing with as patients every day, the doctor's office that we go to, the hospitals that we're being treated at. Those types of healthcare facilities, which we also talk about in industry terms as health systems.

Then you've got your health insurance companies. That great monolith that you're dealing with when you're trying to get those services paid for. Then you've got the products and the devices, the drugs and the devices that you might be getting as part of your treatment. That's really what falls into the pharmaceutical and life sciences product company. Then you've got this fascinating fourth sector within the bigger healthcare sector, which is the new entrance. All the digital health players, the niche companies like Mark Cuban's company that's selling the drugs with a small margin markup on it.

I lump those all together because these are folks who have built companies that weren't highly entrenched in the industry but are trying to really disrupt it and really focus much more on being patient-centric companies and answering patient needs in a way that the other three sectors haven't been able to do quite as well because of their legacy, their size, how they matured as companies.

[00:05:24] Erin: Yes. From the patient experience, all those come together often into one moment. You've got the medicine, you've got the patient office, you've got, how am I going to pay for this? How's this insurance interacting with this experience? I wonder it feels like something where maybe in the past patient experience wasn't the top concern because, I don't know, was there less competition? There was more regulation?

Why is it that now this is something companies are focusing on? Is it “we'll lose you as a customer if we don't?” Is it a moral imperative? Why are we here in this moment now where people are starting to focus on this more and more?

[00:05:58] Erica: I can certainly jump in from a life sciences perspective. Again, I think it is a little bit of all of those things. Your mission and your vision is starting to change a little bit. We also see that patients are more empowered, they're more connected, they're more influential than ever. They also are shouldering a lot more of their healthcare costs with the designs, the benefit designs of some of these payer plans. They're informed.

The other thing, research absolutely shows that they are requesting, and they have expectations of pharma to step up and do a little bit more than just provide a product. Tiffany, when you're talking about all the different stakeholders, what they all evaluate and how they fit into delivering that whole healthcare experience to a patient, it takes everybody together to deliver that. If we're disjointed or we're siloed or we're not speaking the same language, then we don't have a coordinated effort. It becomes very fragmented and becomes ultimately a terrible experience for patients.

[00:07:01] Tiffany: Absolutely. I agree with everything that Erica said, and the thing I would just add is that the rest of the world has advanced greatly compared to healthcare when it comes to the experience economy and focusing on consumer experiences. You have folks in the healthcare system who are having different expectations of the system than the system is ready to provide, because they're used to dealing with the Amazons, the Netflix, these highly personalized, highly integrated experiences.

You go into the system, which like Erica said, has a lot of players that are very disjointed and with different business goals, different abilities to speak to one another. It creates oftentimes a very bumpy patient experience.

[00:07:40] JH: The integrated part in the silos, that's all making sense to me. Some of these examples I can think of cases where the experience would be poor, it's hard to communicate or fill something out for my insurance company, I can't get an appointment with my provider, or I'm stuck in the waiting room or whatever.

Then all the way down to pharma, you could even imagine the packaging is hard to open or I can't follow the instructions and I don't know how to take this drug. That's really important and I don't want to mess it up. You're also talking about all the intersection of these things, where are you seeing the most innovation or the most change as we talk about that stuff?

[00:08:06] Tiffany: I think a lot of the innovation is unfortunately coming from those outside the space, but they're also struggling at the same time. I think Amazon is a great example when they thought they were going to be able to construct their own health system themselves and they had to end up acquiring One Medical because the relationship with the insurance companies was too complicated to establish from the ground up.

They needed to buy an entity that had that relationship established. I think that's a good example where I think some serious disruption's going to come from because they're looking at it from the Amazon lens, not from the legacy healthcare lens.

[00:08:38] Erica: Yes, I think that's a great point too, Tiffany, because there's a lot of push from these companies that really have set the bar extremely high around customer experience. While we are not an Amazon and while  life sciences is held to different regulations, which makes it somewhat challenging for us, we are still held to that same benchmark.

Again, it retches it up a bit. The expectations are quite higher for pharma, but I think we would be remiss to say that there are ways that we can work within the regulations and the guidelines. Looking at the old adage that it's just like pharma doesn't-- we don't work with patients; we work with healthcare providers. That I'm seeing a lot of change even in that, in the way that we engage with patients.

There are organizations now that have experienced liaisons that work with reimbursement and logistics with patients directly. We have nurse educators that are working with patients. I think you see it's a very slow and very gradual shift, but you're starting to see this opening up of how pharma engages not only with the healthcare providers or the proxies that are influential inpatient care, but we're also starting to have that engagement directly with patients so that we can identify exactly what it is they need.

[00:10:05] Erin: It feels like there's so much upside here too, because of, I guess like two things. One, it's hard. If it were easy, everyone would've figured it out already. If you can figure it out, that's amazing. Number two, I think in a lot of cases people are going into a patient experience, maybe not thrilled to be there all the time, probably happy they're getting some treatment or whatever, but it's not going to see a movie or concert or whatever.

If you can make that experience into a positive one, that's really powerful. I think across both of those, there's probably a ton of opportunity to really delight patients or to improve their experience.

[00:10:42] Tiffany: There's an enormous amount of opportunity and these organizations are going to start having to evolve to that for a number of reasons. One, there's the competitive threats of the external players like the Amazons coming in. Two, the government's starting to put into place regulations starting with the government funded plans in which they have to demonstrate patient outcomes.

It's really difficult to demonstrate good patient outcomes without a good patient experience because you want people to come back and get the treatment they need, follow the protocols that they need to do. Part of that is making sure that they're supported as an individual, which really is a very experience-oriented lens on it.

[00:11:16] JH: We're talking a lot about experience, and I feel like anytime you talk about experience is like, well, you need to understand the users and figure out where in that experience you can actually improve things and where the pain points are. That seems hard in this space and industry with HIPAA and I'm sure many other regulations that I don't even know of.

How do you actually go about doing that? Is it just you go find the users and you just have a couple extra hoops to jump through or is it like a fundamentally different approach about how you do that research and gather those insights?

[00:11:38] Erica: I can share a little bit from a life sciences perspective, and I think I'd be remiss if I didn't call out a little bit around the differences and the way we traditionally have gleaned those insights then how we're starting to shift. I know, Tiffany, you had co-authored a really great article and it was around market research and experience design and leveraging that within the life sciences space. It really did a great job, I think, of highlighting the traditional model value and then some of this experience design where we're starting to see pharma shift into.

Traditionally, we do a lot of qualitative research, and it really focuses in, and tends to zero in on core key business questions for the organization. You don't really get that holistic 360 view; I think it's like we're really laser-focused on a couple of different things. While that provides great value to understand potentially your market opportunity with a product, for instance, it doesn't really tell you the nuance. It doesn't give you the color. You're really seeing it in black and white.

This is where I think like those design agencies, those human-centered design agencies come into play. I can personally say working with a couple of different industry partners, we have a lot of experience in traditional market research tactics. Not so many are familiar with human-centered design or design thinking. If you don't have that expertise in-house, I think it is absolutely fundamental that you work with a company that does.

We know that budgets are limited, we know resources are limited so when you have that opportunity to work with a patient and to your point, JH, we do a lot with ad boards. We do a lot of think tanks, pulling patients together. A lot of these companies now have advisory boards, so they're really councils of patients where you have agreements that you look at it an above brand tactic, you bring them together and you help to co-create a solution around some of these hypotheses or insights that you're developing off of the traditional market research that you're gathering.

There's a couple of ways that we do it, but again, I think what's somewhat new and is an approach change for traditional pharma is really looking at that qualitative capture that not just saying, hey, what are these key questions? We want to understand and tell me what your thoughts are on this, but really taking solutions to the table and designing those experiences around the end user.

That's something where we're starting to see a very big shift because we've always done it predicated on assumptions of what we think we know, then we build the product then it's like, how did you like this? Sometimes those outcomes or results are very different than what we expected them to be.

[00:14:28] Erin: I think some of what JH is getting into too is, how do you find people to talk to? Working with-- obviously, you're going to work with the HIPAA compliance and other things, privacy that you want to be thinking about when potentially dealing with some very personal topics. How do you go about finding people to get these insights from?

[00:14:49] Erica: We definitely use recruiters. We also work with other companies. We also work through our patient experience liaisons, which is individuals that work and work directly with patients. I think the biggest factor is, is one, making sure your legal ethics and compliance folks are involved in that process from the get-go. Making sure that those patients and care partners that are working with you are very clear on what it is that you're doing, the tactics that you're trying to learn about, and then ultimately, what you're going to do with that information.

Absolutely, you have to look at privacy, of course, but again, there's ways to do it and making sure that all parties that are coming to the table are comfortable with what you're discussing and making sure that you are committed to those guardrails and making sure that you're not bleeding over certain lines but there's absolutely ways to do that.

[00:15:38] Tiffany: It just takes longer. That's the trick is it takes longer. I think it's really important to work with an agency that is familiar with research in this space because they know how to have the conversations with the client as well as the client's legal team to ensure that all the compliance procedures are being followed.

We take time to be trained on what that particular company's processes and procedures are, because there's material that can be uncovered, like adverse events and product complaints and that sort of thing that need to be addressed. The other thing that's super important too, and why it's important to work with folks who understand research in this space is you want to make sure that the study design isn't further harming the patients because a lot of times, it's not just about the privacy, it's about what the patient's experiencing with the particular disease that they may have at this particular point in time.

With the project we did with Erica, we were dealing with folks that had mental health conditions and some very severe, some were patients that had schizophrenia. We really had to consider what would make them most comfortable in the research sessions and how do we design those so that they feel like they can openly share in a way that doesn't feel threatening to them, that gives them the space to rest and to feel like they can bring their whole selves to the table.

If you're looking at diseases like cancer depending on the severity of that, that's another area where you've really got to be thoughtful about how the research is going to impact the people who are giving us the responses.

[00:17:00] JH: To go a little further on that, you find the people, it took a little longer, but you got them. You're having these sessions and in that mental health example, how do you make sure that you do respect the person you're speaking to and treat that well? Is it like you have the skilled research facilitator involved, but you also in pull in a mental health professional about best practices or in the cancer case, like consult a doctor or some other professional about the best way to do that or how do you pull that off?

[00:17:25] Tiffany: Yes, it depends on the condition. All of the above, I would say, depending on what we're dealing with. It varies on the disease by disease basis but the first and most important thing is making sure you have researchers who are trained in empathetic techniques for doing the research and that they lay out up front how they're going to structure the session, what the expectations are, where they can take pauses and what they're doing and really making sure that they've got this mutual buy-in from the research participant that they're comfortable with how this is going to proceed. Erica, anything to add there?

[00:17:54] Erica: No, I think you've really nailed it, Tiffany. I think the only other thing I would add regarding how life sciences engage with patients is you have to also look at, are you looking at unbranded, non-promotional insight capture? Are you looking at product-specific insight capture?

Depending on which side of the house that falls, sometimes those channels by which we work with certain patients changes a little bit. Again, it's just going back to those guardrails, making sure that you are doing it compliantly, and of course, ethically to all those things that you're saying, Tiffany. Having somebody that is well versed in working with patients, they know how to speak and use terminology that is receptive and favorable to the patients that are participating and really just have that general empathetic perspective in order to do and run those sessions.

[00:18:47] Tiffany: Yes. The one thing I'd add too, JH, back to your point about finding these folks, one of the other challenges, and I'm going to fully admit, we don't have this one solved yet, but it's really, how do you be most inclusive? Particularly when you're talking about conditions like mental health, because the more severe the illness, the more likely that you may have patients that are unhoused, that are in group living facilities, that are incarcerated and figuring out, how do you incorporate those voices into your research? That's something that we're digging into a little bit further, but it's very important to make sure that you're casting a wide enough net that you're really talking to your whole audience.

[00:19:21] Erin: That's a great point because I know historically with testing of medications and a lot of the research in the health space, it hasn't been the most inclusive including not including women for example. Is that something that's top in mind more generally?

[00:19:35] Tiffany: Very much so. We've done studies where we've included Spanish first research, utilizing researchers that are really skilled in cultural competency if we're talking to a particular population that to your point, may have not been included or included in inappropriate ways in previous research.

[00:19:54] Erin: We've talked a bit about recruiting participants and gathering insights that are going to be useful for ultimately creating a better patient experience, but maybe we could talk about more broadly, where are we trying to end up? What does it mean to have a good patient experience because I know there's a lot that goes into that but in terms of, I guess a little bit of a framework of how you think about transforming a business on a spectrum from patients who are those to "Wow, we've really delivered something we can be proud of here." What are the ingredients and things you want to be thinking about to get there?

[00:20:28] Erica: Erin, just to chime in here and I think this goes a little bit back to the previous question is ensuring, one, that we have representation, that we have a heterogeneous sample that is providing input and insights into what it is we're trying to deliver. When we talk about what that baseline is that we're delivering versus what that ideal state is, the ideal state from my perspective is ensuring that the experience that our company is delivering is meeting or exceeding the expectations of our patients and care partners. That's, to me the ultimate goal.

One, when we look at, and I can tell you, even within life sciences we have been looking at this very, very heavily, not only from the research and development arm where clinical, you know, historically, are really challenged, and we haven't done a great job in getting that representative sample, but all the way through the commercialization insights, market research, qualitative research that we're doing. We're finding we're not doing a great job.

When we look at that, we're actually putting together guidelines that are specific to how do you ensure that your recruiting tactics and that the ad boards and those qualitative research activities are incorporating not only the competence but making sure that we have the right people at the table. It's really actually having almost a steering committee come together, holding the organization accountable to all those functionaries that would be running that type of research and saying, "Are we measuring this?" "Are we looking at it and are we employing that the guidelines that we're putting into place?"

That's a big change and it's something I think that we all said was we're committed to doing it, but now we're actually putting a little bit more teeth behind it. When I look at that, it's really starting from ensuring that you have the right people, but then also ensuring that you are measuring what it is you're putting out there.

I think, Tiffany, referring back to your article, too, which I love that you put this in here. Market research usually tends to answer a key business question and then pharma takes that information and we develop a solution, and then we put it out there. We haven't done such a great job of closing the loop and really understanding was the solution we put out there really meeting or exceeding the expectations of the patient.

If we find out that we're falling short, are we going back into the process and looking to improve and iterate and make that experience, solution, program better? That's really, I think the bigger change there is really looking at it that we have to follow through that entire cycle and ensure that we are measuring the impact and making changes when needed.

[00:23:10] Erin: That reminds me a lot of what you hear about in digital design a lot, which is this continuous discovery program of we learned, we built, we measured, we learned, we built, we measured, and it never ends. The learning it's a fun part of it but if you don't use it and measure it and show its impact, you really haven't done all the work.

[00:23:32] Erica: Erin, I would love to just jump in on that because digital therapeutics is a big area for us and for many industry providers. I think there is actually a very interesting part of this. We know with when we talk about a digital therapeutic, making sure that we're designing that solution around the user experience is more important than ever because we know that in order for that solution to work, we have to have repeated engagement. What we find, though, is that's not always the case though.

We still predicate our solution on what we assume our end-user needs, and then we put it out there and that's why we have this whole graveyard of apps just sitting there not being used. I think there's absolutely room for improvement there too and probably even if not more important to really ensure that you're capturing that user feedback very early on in the iterative process. I think a lot of times we come late to the game on that as well.

[00:24:33] Erin: Yes, and that's a great point too because we talked about you've got your in-office experience, the insurance experience, the medications, and so on, and then you've got the digital and the in-real-life. There are all these dimensions to it. I think that's why you talked a little bit earlier about really aligning the entire organization around some of these learnings too when you think about the entire customer journey. I imagine that's not the easiest thing to do. Curious to talk a little bit about how do you work toward making that happen across customer touchpoints.

[00:25:05] Tiffany: It's very challenging. I've worked both on the client and the agency side, particularly, worked on the client side in pharma. I've also had first-hand experience on Erica's side of the desk. In my dream world, if we're solely looking at pharma, they would start the patient-centricity initiatives when they're doing compound discovery.

When they are trying to say when they've got the bench chemists looking at different things that might be a good treatment for something, that they've actually done patient research up front and already have identified what is it about that particular disease state do patients really want to treat because it's hard with a product that's not a digital one to iterate.

Once the compounds are approved, and on the market, it's not so easy to go back and make wholesale substantial changes. I would love to see it start back there but it's just an entirely different mindset because it's very much an in-the-lab type of work stage at that point. Really, I think zooming back out and knowing what the patients want even from day one can make a huge difference.


[00:26:02] JH: Quick, awkward interruption here. It's fun to talk about user research. You know what's really fun? Is doing user research and we want to help you with that.

[00:26:11] Erin: We want to help you so much that we have created a special place, it's called for you to get your first three participants free.

[00:26:22] JH: We all know we should be talking to users more, so we went ahead and removed as many barriers as possible. It's going to be easy; it's going to be quick, you're going to love it. Get over there and check it out.

[00:26:31] Erin: When you're done with that, go on over to your favorite podcasting app and leave us a review, please.


[00:26:39] JH: A bit of a tangent, but culturally, I imagine this is challenging. You have all these scientists and people with probably pretty quantitative backgrounds, a crowd that's pretty familiar with P-values and other stuff from clinical trials and things. Is there any challenge with getting people to accept in the utility and benefit of qualitative data.

Just the second part of that would be, usually, the anecdotes that we hear from other researchers is you have these video clips from the sessions show these two people, these are so impactful and stuff. I'd imagine you probably don't have that because of all the privacy concerns. I'm just curious to hear if that dynamic is something you have to navigate as well?

[00:27:12] Erica: JH, I can definitely chime in on this one and I know Tiffany probably knows this all too well just from serving on both sides. I know we've had discussions around this. Yes, it is absolutely challenging to get individuals to appreciate the merit or value of qualitative research and really looking at it even more specifically around experience design. Again, I think what we can measure easily is what we tend to prioritize.

Knowing that pharma is very considerate around their budgets, we always have cuts, resources are not, never-ending. The first things that tend to go are the ones that are not easily measured. It's again, another cultural shift. I think when we look at the way pharma has traditionally done market research activities, and understanding that while that is all extremely valuable, it's also imperative that we understand that qualitative experience design, the empathic part of that journey, and what are the psychological factors that drive behaviors.

I can tell you this is something that goes on and on with market research teams, with a lot of our other teams that are working from the patient engagement standpoint. I would say, in order to make this stick from a cultural perspective and a patient-centric approach is that one, you have to have buy-in, and not just buy-in, but commitment from your executive leadership. If it's not there, it doesn't bleed throughout the organization.

Understanding that, one, that's where the financial dollars come from but also, they are key in ensuring that all function areas are marching to the same objective. The second part of that is, how are we measuring or holding people within industry accountable to ensure that we're capturing this 360 view? That's also a challenge.

I think sometimes the metrics by which different functional areas are assessed on are quite different. Everybody will come together and say, "Oh, this is great, this is wonderful." "Yes, we should be doing this," but at the end of the day, people are being held to different metrics. I think that's something that needs to be thought of from just an organizational leadership approach.

[00:29:31] Tiffany: I think it also has to continue to trickle down from the FDA as well. They've put out a lot of guidance on being more patient-centric, but I think one of the challenges that from the pharmaceutical side that you run into often is legal and regulatory misinterpreting patient research is being somehow promotional or even HDP research, healthcare provider research being promotional, and it's a very hard mindset to undo. They assume that marketing is trying to just get the brand message out there more versus really trying to help patients.

[00:30:01] Erin: That's interesting. What's the impact of viewing that research as promotional? How is that a challenge?

[00:30:06] Tiffany: Well, if they view it as promotional, they won't allow it to be done and they do set caps on the amount of research you could do in a year because of the number of patients that you would be touching, particularly if the brand will be discussed at all. One of the ways around that is to do it more focused on the disease state, which in many ways is often more valuable. Even then, I still think there's a little bit of reticence on the behalf of the med-legal teams or legal regulatory teams to do that.

[00:30:31] Erin: That's really interesting.

[00:30:32] Erica: It's a great point, Tiffany. I would just add too just from FDA, we see the patient-focused drug development guidance is coming down the pike. There are some expectations and requirements from FDA to put forward patient-reported outcomes and really measure that patient experience. I would still say we have a long way to go because the other thing is FDA puts a lot of emphasis on the clinical outcome.

Sometimes it's hard to design a trial to make sure that you're measuring all the things that will absolutely help get your drug approved, but also ensuring that you are putting those quality or those patient interests, those end metrics within that trial too, and making sure you're measuring that as well. You had asked a really good question, what happens when we don't really align on those two things? I think a great example of this, and I think it just illustrates the issue perfectly.

Let's just say large pharma company measures a drug, they develop a drug to help a very disfiguring and very challenging skin condition. They run the clinical trials and one of the things they look at is how many days within the month can we keep that patient symptom free? The drug performed beautifully in the clinical trial. They thought they were going to just nail it, it was going to hit it out of the park. Then all of a sudden, they realized that the drug wasn't really taking off the way they thought it was. Patients weren't really staying on therapy.

When they brought patients back to say, "What's your experience with the medication? How does this look for you?" What they were finding was, one, the goal did not align. The number one thing patients wanted that were living with this condition was to be able to leave their house. That was their number one goal. What they also found was there was a severe side effect with the drug, which was diarrhea.

What they were finding was, while it did a great job in clearing up the skin condition, the side effect really didn't align with their end goal, which was really to just be able to leave, travel, do things freely without worry. Again, I think it's one of those things where we look at clinical endpoints, but are we really taking into consideration what the goals are for treatment from the patient, and are we measuring that as well?

[00:32:47] Erin: That's the 360 you're talking about because I imagine in marketing, we talk all the time literally about sell painkillers and not vitamins. We're talking about curing pain here like an acute issue, but do you really understand what the underlying issue is or the most important issue to solve because maybe you can't always solve them while there are trade-offs. I think too about probably a lot of patients are taking multiple drugs, that's part of it too. Is that something you're able to research the interaction of their entire healthcare experience?

[00:33:20] Tiffany: Definitely, that's measured during the clinical trial but then it starts to fall off because there's no good, unified view of the patient experience. I think that's who's going to be the winners. Whoever can really provide this view, even if it's just a player that's somehow aggregating this and allowing the different sectors of the industry to be able to see this, it'll be much better.

What patients on an Otsuka therapy are experiencing because they are on one of their drugs versus something else that they're taking from another company, they may not know unless the patient picks up the phone and says, "Hey, I'm having a weird side effect." There's also not always transparency for the doctors to understand what the full picture is or for the health insurance companies to understand what the full picture is and what the different factors are that might be influencing the patient's progression through the disease.

[00:34:09] JH: Can either of you think of examples in the other direction of this drug was really effective and having all this impact on reducing the illness or the underlying issue, but people weren't sticking with it for some reason, something about the experience of how you had to remember when to take it or apply it or whatever and that experience design or the kind of patient-centric piece helped unlock that so that they could get the benefit from the medication?

[00:34:29] Erica: I can share an example. It may not be medication-specific, but I can definitely share an example of where maybe we missed the mark, and then it was like, "Hmm." After we brought patients together and really talked through, we're like, "There's some improvement here to be made." I would say that has to do with translation.

A lot of pharma companies put out resources that are patient care partner-facing, and then we translate them. We have them translated, certified into other languages. What we were finding out was that, and it really came from one of our Spanish-speaking patients in one of the sessions that said, "This doesn't really make a lot of sense." They saw one of our disease state resources and they said, "What you're saying here doesn't really resonate as to, I think, the way you want it to say it."

This really kicked off a huge initiative within the organization because we were saying, "It's not just enough to take an English-translated resource and just translate it word for word into Spanish or Chinese, for instance." There's actual ways and nuance and the way that individuals would speak and it doesn't necessarily hit the mark.

What we realize we need to really do is work with organizations that incorporate cultural competence, bring patients in that might be Spanish or Chinese as their first language, and actually show them, "Hey, this is what we want to say. How would you state this? How would you want this to be worded so that it's understandable to you and that you would be able to take action on it?"

It was really, I think, a big shift in knowing how many dollars go into direct-to-consumer marketing, all those pieces that we put together for patients. If they can't understand it or if it's not easily understood, it's not going to resonate. That I would say would be a good example of something that we worked through fairly recently.

[00:36:26] Tiffany: Another example I can think of for why patients have a great experience on a particular treatment then don't stay on therapy is of insurance. Until insurance is with the individual and not given through the employer or changes job to job, that's where you're going to run into issues because a patient may be on something and suddenly lose coverage for it.

They may have loved that particular drug, they start a new job, they get a new employer with a new health plan, and they can no longer get that covered. Then what are they supposed to do? If it's something that's really expensive like a biologic or something like that where they can't be paying thousands of dollars out of pocket, they're stuck.

[00:37:02] Erica: That's a great point, Tiffany. Really, insurance holds a lot of the cards in how that experience is delivered. I would say even taking that a step back further when we do research and development, we run clinical trials, they're done in a vacuum. They're heavily monitored. Everything's put in place to ensure that that patient is following the protocol, but real-world experience can look quite different when you start to incorporate all these other environmental and external factors that play into that.

I think, again, getting a little bit better with that as well, once we have something come to commercialization and to really understand what the experience looks like on that arm and being able to marry that with some of the quantitative metrics, data that we are capturing around utilization.

[00:37:53] Tiffany: Tangentially, I'll add to that but it's something that's become very, very front and center and it's an incredibly important thing is this issue of social determinants of health and what in the real world of the patient is getting in the way of them, staying compliant with a particular treatment and having a good experience. You may have the best treatment in the world and it might solve all their problems, but if they can't afford it or if it's a diabetes treatment and they can pay for the medication, but they live in a food desert and they can't eat healthily, that's going to diminish their experience.

I think the industry as a whole is taking a much closer look at this. It's also, again, a tough problem to solve. None of these are quick hits and easy-to-fix ones but knowing what they're struggling with that might not have anything to do with the treatment itself but heavily impacts their health and relation to whatever disease it is, is incredibly important.

[00:38:45] JH: There's something there that does feel when you zoom out and squint a little that it is pretty analogous to the research and design work that happens on the technology and more software side of things of you've built this incredible product or you have this incredible technology but if something in the experience of how people access it and make use of it breaks down, it doesn't really work and it's like you've developed this incredible medication or protocol to solve some issue, but the experience around how you actually stick with it is really painful. You don't get the benefit that you think you've delivered.

[00:39:13] Erin: Is there starting to be more emergent research on the longitudinal life of patients in treatment or where are we in that journey of understanding that over the long term?

[00:39:25] Erica: Yes. I think there is some strides moving forward to be able to better understand that experience. I think what is evolving is how we capture that experience. Again, I think it's heavily predicated on really those black-and-white quantitative metrics, utilization, volume, total scripts being filled, but what you're not necessarily capturing is the why behind what we're seeing in that data.

That I think comes into play with everything, Tiffany, that we've even been talking about regarding the mental model diagram work that we did and the journey mapping work that we're doing. It's really ensuring that we're capturing those qualitative insights and ensuring that we have the right agency or individual with that type of experience to be able to tease out really the components that speak to the hardcore quantitative data.

[00:40:21] Tiffany: Yes. I think the next couple of years are going to be very interesting in relation to that because as I mentioned earlier, with the government starting to require patient-reported outcomes as being a key metric in paying physicians that are participating in the government-based health plans, they're going to be forced into measuring that. That's going to set the precedent for the private insurers as well.

I think there will be more measurement of it. I think the fact that there's an economic loss based on the fact that physicians might not get paid or particular groups of practice might not get paid, I think that's going to accelerate the initiatives around it to help make sure they're then doing the research to see, why aren't they able to stay on therapy? Why aren't they getting the outcomes? There's a large river to cross between here and there.

[00:41:05] Erin: As we were talking about, it's hard enough to get a single, large, say, pharmaceutical company to align across the entire company to provide a good experience. When you think about, as you were talking about-- this treatment was effective, but they lost their insurance. I'm curious, and this is a big question, I assume doesn't have an easy answer, but are pharmaceutical companies say, and insurance companies trying to work together on some of this because I guess in a way, you have to to provide that experience for patients.

[00:41:35] Erica: Erin, yes, we have market access folks that work directly with the payers. We have our HEOR folks that are really providing the cost utilization and outcomes data to craft that story, but I also would say we also have other ways to help support patients outside of that.

We know that insurance is a huge barrier for patients. I can look at ourselves and patient experience and support so that's the function area that I work in. We have a lot of programs. If it's not covered through co-pay cards or manufacturer financial assistance, we have our foundation. The foundation will help patients that may qualify based on certain aspects of their demographics.

We also work directly with payers. We work directly with healthcare providers in order to help facilitate that prior authorization or appeals process. There are different ways that pharma companies help navigate that water, but like Tiffany said, it's a big bridge. There's a lot of power behind formulary and tier status on an insurance. When you look at specifically our Medicare population, your ability to affect that becomes quite small just because of a lot of the legal regulations that are in place around Medicare.

It's really ensuring too, one of the things that we look heavily in is around the local advocacy groups, those offices of aging. A lot of those support resources that are within those geographies to help tie patients that may qualify for low-income subsidy or some of those state assistance programs.

Again, a lot of people, they just don't know that those resources are out there, and they don't know how to engage with them. That's another area where I think pharma can step in and really ensure that patients have all avenues accessible to them.

[00:43:31] Erin: Yes. Help them work around and with the barriers versus getting rid of barriers that are maybe really, really hard to get rid of in the short-term. Well, great. This has been so educational for me, and I think for probably a ton of our listeners. I'm curious if maybe from each of you if you want to share just a closing thought on things to keep in mind as working toward being more patient centric.

[00:43:53] Erica: Yes, I can just jump in. I think it's really simple. Talk to the people that are going to be using your solution, your product. Involve them very early and ensure that you have the right representation at the table. Making sure that you have adequate sampling within your population that you're looking to glean those insights from.

[00:44:15] Tiffany: I would second everything that Erica said and just say it also does require organizational changes as well. It requires a lot of commitment from the top leadership downward to make sure that that's being put front and center.

[00:44:27] JH: Yes, that makes a ton of sense.

[00:44:29] Erin: Advice we hear from researchers a lot in terms of choosing what organizations to work at and to have an influence started in an organization that believes in research. If you start there, you're set up for better success so it's great advice. Thanks for listening to Awkward Silences, brought to you by User Interviews.

[00:44:52] JH: Theme music by Fragile Gang.

Erin May
SVP, Marketing

Left brained, right brained. Customer and user advocate. Writer and editor. Lifelong learner. Strong opinions, weakly held.

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