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The PharmaBrands Podcast
Patrick Glinski, President of Normative on the Need for Accessibility in Patient Support Programs.
PSPs have been, and are increasingly, key for brands and patients alike, but their impact is often limited by accessibility. How a patient finds, interacts with and ultimately benefits from a PSP is almost wholly dependant on how accessible that program is. But the teams – both agencies and industry - who build the key points of interaction in a PSP are not often well-versed in experience design. In this episode Patrick shares his views on how innovation, empathy, patient-centricity can enhance the accessibility of Canadian PSPs.
This episode was brought to you, in part, by NFA Health, a creative marketing agency born out of a desire to make healthcare experiences better. We appreciate their support and encourage you to learn more at, nfahealth.com.
Our producer is Darryl Webster with Chess Originals.
Hi everyone, I'm Patrick Galinsky, president at Normative.
Speaker 2:Patrick, thanks for joining us today.
Speaker 1:Thank you very much. Thrilled to be here.
Speaker 2:You and I have known each other for maybe a couple of years now, and over the last couple of years I have come to understand that you have many, many, many, many vocations when it comes to your professional life. Today we're going to focus in on the normative part of your world. We could kind of do a hat trick of podcasts with all the stuff that you've got going on, but we're going to focus a little bit on your role at Normative. We talk about patient support programs that you guys have done, but maybe situate us first in the world of Normative, talk a bit about Normative, the agency, what the focus is, and then we can jump off from there.
Speaker 1:Absolutely so. Thanks so much, neil. First of all, normative. I like to think we're like the best kept secret in that we've been a Canadian innovation company for over 15 years. It's almost hard to sort of say that. So, normative, we're a human-centered innovation firm, which I know in and of itself is kind of like a mouthful statement. The way that I like to qualify it is.
Speaker 1:First, I like to define innovation, which for me, super simply, innovation is about remaining relevant and from my perspective, you kind of can't stay relevant unless people care about what you do. And so over a decade of helping, like different teams launch different types of products and services and experiences, you know what we've consistently seen is that when you're not creating things for the audience that you're actually designing them for, nobody tends to care about what you're actually doing. So you know why we sort of bring together this idea of human-centered innovation is basically because, like, we want to understand your audience, what your audience cares about, and then we want to make sure that you're relevant for that audience, and we do that by designing different types of products and services and experiences. So you know, sort of end-to-end what that typically looks like, that typically looks like is we spend time getting to know your customers, what their needs are, and then we actually have a team that's focused on designing minimum viable solutions so that we can as quickly as possible test, validate and iterate based on what we think the hypothesis around what you should build should be, so that we can de-risk the process of bringing anything new to market.
Speaker 1:And this whole approach kind of came from years of working with both corporate innovation teams and startups, and the big difference between the two is classic corporate innovation team. What they tend to do is they tend to set a plan. It's like I've got this business objective, I'm going to introduce a new idea, I'm going to bring it to market with the marching orders of what this year's budget planning cycle looks like and you contrast that with what a startup looks like. Startups beg borrowing and stealing for every dollar that they have and if they see that something isn't working, they get the heck out as quickly as possible and pivot it really fast so that they can try and figure out what product market fit is. So you know, we sort of take that same philosophy from startups and bring it to corporate innovation teams and just try and find product market fit as quick as humanly possible.
Speaker 2:Just reflecting on that, the human centered innovation, which is also kind of like the other side of the coin around some customer centricity you were talking about. It is amazing, is it not, how often brands or marketing teams come to an agency partner with a very self-serving mandate. The number of times I've said I get why you want that, why would your customers want that? Why do you think it's so hard for brands and brand managers who really spend their time in the service of both the end user and the brand, like they live at that intersection? Why do you think it's so hard often for them to come and give a brief or engage an agency partner with a very customer-centric mentality versus a very brand-centric mentality?
Speaker 1:Yeah, so love the incredibly leading question because clearly you've got a perspective on it too. But I mean, look, my starting point of this is that unfortunately, the vast majority of brands and companies just aren't set up to innovate, right. So I'll go back to sort of get academic for a second. But, like Roger Martin introduced this incredible sort of model as he started talking about the concept of design thinking, where he sort of says, you know, every, every early organization starts with a mystery what's the big idea? That sort of sparks the introduction of the organization. Then you know, from mystery it gets to a point of heuristic, like we're starting to see some traction, we're starting to see some success. So how do we start to scale that? And you know, from a business perspective, start to improve the margins and how we approach it. And then you know, once it gets to a point where there's incredible success, it's like, okay, margins and how we approach it. And then you know, once it gets to a point where there's incredible success, it's like, okay, well, how do we turn this into an algorithm, a structured way of approaching things? And you know, in that sort of march from mystery to algorithm, what ends up happening is you become more and more focused on what's happening internally. You know, how do we make sure that we've got the right operational processes to set ourselves up for success, how do we improve the margins on things? And so, because of that, you've got this like organization who's starting to shift from an outside perspective to an inside perspective.
Speaker 1:And as that happens, you know, and it happens over years it's a gradual process and then, all of a sudden, what happens is there's either, you know, extra budget or you know an innovation mandate that comes from top down, or you start to see the erosion of market share and all of a sudden, everybody struggles because they're like, okay, well, we got to try something new, but you've actually redesigned the organization over the course of several years of incredible success to be focused in on not something new, but being really, really good at the old, and so I think that's a big reason why it happens.
Speaker 1:And when you think about an internal team and what it looks like to actually get innovation moving, you know a big part of it is okay, well, we need to, you know, state what we're trying to achieve from business outcomes perspective. We need to, you know, clearly, state ROI. We basically need to play a game that is designed against an operating business as opposed to an innovating business, and if you haven't done what you can to be able to maintain sort of what that innovation approach is, then it just becomes really hard to turn your gaze outside and you start to rely on the things that you have available to you, which is, you know, your classic competitive intelligence or secondary research. That is great to provide really, really big, high-level details, but isn't great to tell you why people should care about you existing.
Speaker 2:We just had our Creativity Now conference last week and one of the things I was talking about there was this notion of innovation as a line item, where what is your innovation initiative this year, which by its very, which very, disintermediates innovation from what you do on a day-to-day basis and it almost it almost sort of casts everything else under this cloud of not innovative, because innovation happens over here and not on the side of your day-to-day work.
Speaker 2:And I used to talk to clients about the kind of notion of going from the couch to the court right, where basically you don't ask somebody who watches a lot of NBA to all of a sudden get in and play in the big leagues. And that's a little bit what happens, I think, with marketers, where there's no innovation kind of strength and muscles and talent that's being nurtured, but then all of a sudden, from the top down, you need to innovate or you need to have an innovation tactic. And that's a really tough spot to be, I think, for marketers, especially if they don't have an agency partner who's also got kind of incremental innovation in their DNA.
Speaker 1:Yeah, I totally agree with you and I love your statement around the innovation checkbox because you know it's performance review time for a lot of our clients right, and you'd be surprised how often.
Speaker 1:Well, I mean obviously you know now how often innovation is truly a checkbox, and what I find interesting about sort of that concept is that implies it's a one and done, and so many times when we actually think about our like broader set of tactics, somebody thinks, oh, I've got this big strategy, I need one tactic underneath it.
Speaker 1:I'm going to check a box and it's going to be complete. Well, the reality is is like, if that strategy is the biggest route to success, well you should keep checking a whole lot more boxes and cover it off as much as possible instead of moving on to something else entirely. And so you know, to me, the idea of an innovation checkbox, yes, I do believe that teams need some type of push or mandate to make sure that innovation remains top of mind and relevant. But it's not one thing. It's like really truly a set of cultural activities that needs to be embedded in the design of the organization. If I can tangent for one second, because it's kind of interesting, weirdly enough, my whole sort of philosophy around how innovation management works actually started when I was a summer intern at a financial services company, if you can believe that.
Speaker 2:Oh, the hotbed, hotbed of innovation is financial services and being an intern. So, yes, go tell me.
Speaker 1:Can you imagine it? So the first real job I had not that being a camp counselor and selling snowboards wasn't a set of real jobs, but I was actually doing a series of summers at a company called MBNA Canada. Mbna invented the idea of the endorsed credit card, so for everybody who gets their university credit cards or their law firm credit cards. They invented the concept of it and they actually had a program that they had built internally called their Masterpiece program Now Masterpiece, maybe you could refer to it as a checkbox if you want to. But across the entire organization they basically said it is everybody's responsibility to innovate and we are going to put a structured program in place that is embedded in how we operate as a company. That is our commitment to innovation. So literally everybody across the company, including everybody working in the call centers, everybody who was working in collections or scoring credit papers they had this little plaque on their wall that said the number of ideas that they had submitted into the program. Every quarter you were reviewed and you were asked how many ideas you had submitted in. And you might think, oh, submitted, that's very much a checkbox. But there was the other side of it where they actually had a manager literally in place supporting the implementation of this program. So if you had an idea, you went to that manager and they actually helped to guide you through a structured innovation process. And I think it was on a monthly basis. All of the executive leadership, monthly basis, all of the executive leadership sat and reviewed all of the ideas that moved through and people were bonused and promoted based on their commitment into this program. So again you can look at that and be like, oh, that's very getting things done, boxes and arrows types of approach to innovation. But actually when I look back on that, it is one of the best examples of embedded organizational commitment to innovation with the right structural support and truly encouraging everybody to do it.
Speaker 1:Now my idea that I submitted and got paid for was to buy the mbnacanadaca domain. Um, so you can see how long ago that was. I'm aging myself. But uh, but, uh, I got one through. I got bonus based on it. Uh, I got a high five and a handshake, uh, and it was incredible. And then now on the url, think about how much that well it's, it's worth nothing now because they ended up getting bought by bank of america and then TD. So I think the MVNA name is long gone, but I can tell you the the impact that that program had on me. And again I've I've now helped to implement innovation programs in. You know I I'm not sure if I'm allowed to name off all the names, but a big luxury hotel chains, a big consumer package goods companies, lots of pharma companies as well, and that embedded philosophy still sticks with me with every program I get involved in.
Speaker 2:Do you have any advice for the marketers that are listening or the agencies that are listening, who work in an environment where innovation is a checkbox but they want to sort of embed incremental innovation into their day-to-day? I appreciate that part of it is just a way of thinking, but do you have any ways of doing that you've found helpful for people who want to make that shift to? How am I thinking more innovatively and how am I looking at this a bit more multi-dimensionally than kind of innovation is the thing that I check off before my review gets completed.
Speaker 1:Absolutely so. First thing I want to say is like I started into the innovation consulting space and when I say innovation, like pure innovation consulting at least 15 years ago. And what was interesting is, over that period of time, actually innovation as a word has had good days and it's had bad days because at different points in time, for some innovation in those early days was about creativity, for others it was about putting a whole bunch of post-it notes in a room and then it was about ideas and then everybody hated innovation because nobody actually knew how to implement it and build businesses within corporate teams. So I mean, first thing I'll say is like ignore the word innovation, because the word innovation is kind of meaningless, because it can mean everything, it can mean nothing. It can be great in some organizations, it can be quite sour in others. So I'll go back to this idea that innovation is ultimately about an organization remaining relevant. And if you as a marketer or somebody on the agency side wants your client or your own organization to remain relevant, I mean that in and of itself is sort of the first emotional push that sort of suggests okay, you are an innovator, now you need to figure out how to navigate the structure and, unfortunately, organizational politics to get there. Now you wanted to talk about innovation. I want to talk about politics because you have to understand that true innovation work brings those two things together incredibly closely, usually under the lens of organizational change management Again, super unsexy topic.
Speaker 1:Why kind of all this matters is because innovation is kind of like a strategic approach to achieving something for an organization, and the first thing that I say whenever I'm working with a team who wants to you know, air quote get innovative is, I say, weaponize the organizational mission statement. So start at the very top with the organizational ethos and, ideally, what the major critical success factors or, you know, kpis or organizational objectives are for the year, or organizational objectives are for the year. Because when you start with that and you start to find innovation programs or activities underneath that or, pardon me, that help to support or service that, it becomes really difficult for your managers and senior individuals to say, oh no, this doesn't fit. So I'll contrast that with what I see a lot of the time. A lot of the time, people come up with really great ideas and they're like why can't I get this through internally? Well, the reason you can't get it through internally is because there's a whole bunch of set processes that the organization is literally designed to support. Back to that, like down to an algorithmic level, in order to make the company work successfully. And so, instead of swimming against, instead of thinking that, oh, an innovator needs to be different or needs to be outside, actually you need to figure out how to leverage the we'll call it what it is bureaucracies that are in place in order to successfully get your thing supported. And then you need to find very senior leadership to be able to support it.
Speaker 1:Last thing I'll say and I can't say who it was, but in the past I worked with one of the big management consulting firms building literally their own internal innovation process, and we put all this work in place and able to build out a proper innovation function classic idea sorting, idea gating, review committees, et cetera.
Speaker 1:We put that all in place and then started working with a bunch of the senior partners there, and what we found was they were happy to send all of their junior team members through that type of process, but for themselves they knew how the money worked, and we always sort of say innovation travels the path of least resistance.
Speaker 1:So for those senior folks, they figured out how to unlock budgets for the things that they wanted to work on, and so those things happened. So the other part of it is yes. Number one make sure you weaponize the organizational mission and the organizational KPIs to support what you're trying to do, because it's hard to say no to it. Number two know how money flows internally, just like if you were working at a startup. You live and die based on your ability to be able to find and navigate the finances to keep yourself up and running. You need to be able to figure out how to navigate your own internal budget processing, and that's not just to kick off your program, that's to make sure that you have the right support and understanding of what the gating criteria all the way through to launch actually is. Thank you.
Speaker 2:And one of the things that I think about, you know, when I used to run the agency, is that I would say to the team, if we were coming up with a campaign or an asset or an idea for a client, is what about this excites you from the perspective of the audience? Right? What is the thing that you're excited about that you think is brave? That's different. And then empower your clients with the vocabulary to help sell that in, like get the clients excited about how this will make a difference for the audience and then help them with the vocabulary that will resonate with their managers or finance or whatever, to be able to get to a yes, which I think is consistent with that, being mindful of that organizational friction.
Speaker 1:Yep, and I would add to that, not to overcomplicate things, but every organization has a different decision-making process and back in some of my earlier innovation days we used to use the heuristic part strings and purse strings.
Speaker 1:Basically, we need to figure out how to communicate why an idea should move forward, on one hand, with emotional resonance and, on the other hand, with that sort of organizational KPI alignment. And guided by something as simple as that, I would say we had a lot of success. The one piece that I want to add to that, and maybe something that I should have added into the previous comment, is just that I would say the vast majority of people want predictability in their lives, if that makes sense. You want to get up, you want to go to work, you want to know what needs to be accomplished today, and what's interesting about innovation, and innovation programs in particular, is it often sort of like throws this wrench of unpredictability into things which, for a small percentage of the population, is really exciting and for the vast majority of the population, it's terrifying, it's scary, it's disruptive.
Speaker 1:And so the other, like a little bit of advice that I would give, and it is like make it not scary.
Speaker 1:Even if you think this is like the wildest, most different, most unique thing that has ever happened in your you know industry or category, ever happened in your industry or category, communicate it differently.
Speaker 1:Do not make it scary or too big, because at some point you're going to have a purse strings person in front of you who's looking at it solely through the lens of rationale and thinking, okay, this is too much to tackle, given everything else we have going on. So, you know, innovation is, in and of itself, about like trying new things, and so that can feel really risky. You don't want organizations to feel like what you're trying to do is risky, and that's a big reason why, again, I kind of think of innovation like it's not a one thing. It's a big reason why, again, I kind of think of innovation like it's not a one thing. It's a company needs to be managing a pipeline, because you have to think of it like there's a portfolio and some things are going to hit and some things aren't going to hit, and we just need to be really intentional about how we sort of like manage all of these different things together.
Speaker 2:I think that if the original stakeholder so the brand manager or the head of the innovation team or whoever that person is is more anxious than excited about a certain idea, they are going to communicate as much anxiety as excitement to whoever is up the food chain or beside them, and that next stakeholder will feel that and likely there will be even less excitement and more anxiety, and on it goes until the final person that has to say yes is really probably getting not much other than all of the anxiety right, so-.
Speaker 1:I could not agree more. And I might even add look, at some point you're going to have a bunch of decisions to make around what to move forward and what to not move forward, and your innovation is probably going to be compared against the potential returns of something that's very familiar from an operating perspective. Every business decision, no matter how rational people try and make it, there is an emotional component to it and there is personal bias that comes into play around it. And so to exactly your point if there is anxiety there, it's going to show up in a score and it is going to impact whether things move forward.
Speaker 1:And it sounds weird to tangent this meal, but or sorry to like, bring it back to the core topic of human centered design. But like, this is why at Normative we call ourselves a human centered consulting firm, because everything we've just talked about is human behavior has been about how organizations make decisions about innovation. But unless you are intentional and understanding, like, what are the needs of here, your internal stakeholders to support innovation, then you're not going to get something through. So you know, from an innovation process, design perspective, or like trying to get something sort of past the goalie, an innovator has to think about these both sides. What does like? What am? I has to think about these both sides. What does like? What am I trying to bring to market for a customer? And then what am I asking the organization to let me do in order to bring that thing to the customer? And that's why innovation is so tricky.
Speaker 2:See, Patrick, it wasn't a tangent, it's just. It's just the narrative arc that I'm able to create as a master podcast host. To bring it back to normative, which is exactly what I was going to do, but you did it for me Amazing. So situating ourselves back in normative for a second that I want to touch on as a jumping off point to talking about patient support programs and some of the work you're doing around accessibility with respect to patient support programs is you know, you described Normative as developing solutions. Maybe sort of break that down a little bit. What exactly does that mean? Sounds cool, but what kind of solutions? Can you give folks an example or two so that they can kind of plug it into their brain a bit?
Speaker 1:Absolutely so. I mean first thing, I'll say, because we're putting this under sort of a lens of innovation. It means that there's going to be something new that's created. When I say building something new, a lot of the times, basically, organizations will come to us and say, okay, well, we have our core thing that we're doing. Now. What we want to do is find a new line of business to be in or a new area of our business to be in. We're introducing a new service to add on to our current state patient support program to help to support our business schools.
Speaker 1:So this is why it's the curse of the solution word. You know, sometimes we're building digital products, sometimes we're building support apps, sometimes we are building literally like health services, and in a number of instances we have built startups from the ground up, the sort of consistent piece around. That is number one we're always making sure we understand, like, what are the people on the other end of the service actually in need of? Number two we're then really clarifying what's the value proposition of the thing that we're trying to bring to life. And then number three we're then really clarifying what's the value proposition of the thing that we're trying to bring to life. And then number three we're figuring out how do we test and validate that value proposition literally as quickly and as cheaply as possible, because ideas are not precious.
Speaker 1:It's the execution of them that is precious, and we want to systematically de-risk bringing anything new to market. So what that ends up looking like is, as an example, we've worked with a number of big financial services institutions to help create sort of new product lines with them. In the healthcare and pharma space more specifically, we've partnered with medical device startups to clarify the value proposition and do testing in hospital With pharma teams. Specifically, we've built medical tracking apps that have ended up being spun off into separate standalone businesses. So I'd say the types of outcomes vary, because when you start an innovation program, you don't know what you're building quite yet. But what's consistent is understanding what people need, figuring out how to turn that into a clear value proposition and then making sure that we're bringing together the right team in order to build, test and cut things as quickly as possible if they're not performing.
Speaker 2:Thank you, that helps. Also a big answer. So I'm going to use the understanding what people need as the segue into talking a bit about patient support programs. So you spoke recently at the Patient Support Summit, which I understand is a great event If folks who are listening have a patient support program as part of their mandate. You should check out the Patient Support Summit and I thought it was interesting. You and I actually chatted a little bit before the presentation about this topic, but you talked about designing for accessibility in patient support programs, which I think listeners might immediately assign a definition to accessibility within the context of a patient support program, but I think that you're thinking about it a little bit differently. So talk to me about what does accessibility and its ability to transform your patient support programs. What does that mean in your world?
Speaker 1:Yeah, definitely. So first thing, I totally agree with you because obviously I talked to a lot of PSP leads about the topic of accessibility and the first thing that comes to their head is like, oh, you're talking about web compliance.
Speaker 1:Yeah, increasing the font Screen readers and fonts and ramps and look, what I would say is all of those things are sort of like touch points of accessibility. But there's a much bigger and kind of more strategic topic that sits over top of it, which is sort of like the broader strategic intent of what accessibility actually means. So you know, for us accessibility is really about allowing people to show up in whatever way, shape and form they are, and to experience and experience through that. And this is actually like super important when you think about PSP design, because, like whenever a team creates a PSP, you're creating it to support the experience of your medication. Again, we'll sort of like pragmatically call it what it is. I know we can't always talk about it in the sort of boardrooms, but adherence, compliance, are two words that get talked about a fair bit and PSPs consistently show to increase adherence somewhere in the area of 70%. So your PSP lead, you are building your PSP to help to support the experience of your medication.
Speaker 1:But here's where things sort of start to fall down from an accessibility perspective. Starting point 25% of all Canadians live with some type of disability. So already right at the gate, one in four of the patients who experience your PSP will have some type of you know what I'll call sort of like air quote classic disability, where they might have visual impairment, they might have a motor issue, they might have a cognitive issue. But already that means that, okay, one in four people will at some point, when they're intersecting with the different touch points of your PSP, have some type of barrier. Okay, so that already starts to rationalize why accessibility is something important. But let's go a couple steps deeper. So a couple years ago, Microsoft's Inclusive Design Lab basically introduced the concepts of situational and temporary disability. So if you think of a classic disability is missing an arm, now let's go to a temporary disability. Well, somebody has a broken arm. In that instance that person has the same disability. It will not last forever, but still, when they show up and intersect with your, your PSP touch point, they have that type of barrier. Let's go a step further and say situational disability. Okay, you have a woman who's holding a baby or holding bags. You know, in those instances again, there is this instance of barrier that occurs for that individual. And so, you know, microsoft sort of, through this philosophy, sort of says you know, you should actually think of 100% of the people who will interact with any service that you create as somebody who may, in that moment, have a disability, and all of a sudden it really like that data really sort of changes your perspective on how you should approach the overall design of the experiences that you provide. And this is sort of like the big foundation of why the inclusive design sort of movement is so critical to consider as part of PSP design. So now let's go one more step further.
Speaker 1:Even I would argue and again, I've now done, you know, in my career, north of 50 different ethnographic studies on different chronic disease experiences. I have spent a lot of time co-designing with people living with different chronic diseases. We think about any condition that pops up. There is the physical limitations that happen, but also psychosocial considerations that actually get left off of any discussion around how to actually design a PSP.
Speaker 1:The very simple one, you know, at the PSP summit last week, what kept coming up and people kept talking about was oh, you know, there's a mental health crisis right now and people living with different chronic diseases are experiencing a lot of mental health issues right now.
Speaker 1:Well, you know, I would say a lot of folks will say that and it's sort of like a lip service, comment to it an acknowledgement that it is true, but not really action against it, and what I would suggest is okay. Well now, if, for example, we're dealing with a condition like psoriasis very, very simple example where I've done qualitative research in the past when I spoke to patients with psoriasis, what I heard is that you know many of the people that I spoke with if they even had the smallest percentage of psoriasis that was visible on their skin, they were experiencing some pretty traumatic mental health issues, definitely large degrees of social isolation, depression, et cetera. Now, if you're designing a PSP program and it requires you to go into a clinic, for example, you're now basically asking a whole bunch of people who are really struggling with aspects of mental health to go out in the world. That's a different type of trauma.
Speaker 2:And do the thing that is causing them the most anxiety.
Speaker 1:Exactly so.
Speaker 1:You have all these stacked considerations and this is where I sort of say it's so critical, as a PSP leader, to number one, understand that it is very likely that the vast majority of the patients that your program is in place to support are, at some point, when they're interacting with the program, going to experience some type of physical disability and or psychosocial disability. If that's the case, well, you need to be considering that in the design of your programs. And what we have also consistently seen and heard is that actually the PSP suppliers, they need good requirements, and in the absence of good requirements, as a designer, I know I end up designing for myself, and so you know, with my team at Normative, what we've been really working on is working with teams to understand what are the different physical and psychosocial considerations that come when you're living with a specific chronic illness and how can we actually define that into a really clear set of requirements that allows a PSP supplier or an agency to be able to build at touch points that actually consider these things. Yeah, again, long answer.
Speaker 2:Sorry about that. Good, all the answers are long and good, that's good. Well, you mentioned that this sort of stacked considerations, and I think I mean, like you know, think about Maslow's hierarchy of needs like food, shelter, whatever heat on the bottom of the hierarchy, and for some PSPs the bottom of that hierarchy is just really simple, barriers to access. I mean, you say you know designing these programs for yourself. You think about the people who are in a room. They're often sitting with a fair degree of privilege, you know work in a job where they can pop out to pick up their prescription or go to an appointment, have, you know, a spare laptop at home and high speed internet and you're just a whole bunch of of, of, um, uh, you know, a whole bunch of access and and ability that that a lot of folks just don't have.
Speaker 2:It struck me, I remember during the pandemic that, um, you know, one of my um you know sons was, was, uh, in the TDSB and the TDSB sent a note out, um, you know, acknowledging that that a massive proportion I can't remember what the number is a massive proportion of students in the TDSB don't have access to internet at home. The only internet they get is on a phone or a shared device and it was a huge impediment to getting kids into online learning or asynchronous learning. But it really struck me because I don't think in all of my years of designing digital solutions did I maybe internalize that reality as I think deeply important, as I should have. And if I go back to your earlier stat of you know, adherence increases by 70% by a good PSP.
Speaker 1:Adherence increases by 0% if somebody can't access your PSP tens, hundreds of thousands of hours many of the PSP teams actually put in in order to originally architect their program right. It's huge and it's incredibly complex. It's all built under an assumption that people are going to actually use the thing and so you know, our whole perspective is okay if you're going to put in that effort. Perspective is okay if you're going to put in that effort one let's maximize the likelihood that somebody is able to successfully access it, because you certainly didn't put it in place just so nobody could be able to use the things or leverage the things. I think the other part is PSP building is a team sport and so, as a know, as a PSP manager or leader like, you're really the hub with a whole bunch of different spokes, and each of those spokes is a designer who, in the absence of good requirements, will design for themselves.
Speaker 1:It's a funny bridge back to the innovation discussion, but you know, certainly being around a lot of pharma innovation teams, what keeps popping up is like teams are really excited to work on digital solutions, digital apps, technology, ai stuff. But you know, you go out into the patient community and the vast majority of patients are still being served in what I would call very, very traditional ways. You know paper documents, these types, these types of things, and like their ability to use and leverage them. One like is still pretty low content. We've talked a lot about content in the past. Like content is what it is. Often, especially in Canada, content is English and French, so you've got over 40 other languages that are totally unserved, which is a set of patients that could be on your therapies, could be supported by your PSPs, but instead have no access.
Speaker 2:Yeah and sorry, depending on the therapeutic category. Not could be, but maybe over-indexing in some of those communities that are very underserved right.
Speaker 1:Yeah, so totally agree with that. And just one more point. Actually I guess technically two more points to add over top of this, it might be three actually, patrick, can't help myself.
Speaker 1:I love my numbers, I love my letters. So last week, at the PSP summit, one of the other things that we kept hearing about was that, you know, psp costs are out of control, which I can totally appreciate. Now, one of the reasons that they're so out of control is because, obviously, it's incredibly high cost to continue to add staff into PSP management who are effectively acting as a bandaid management, who are effectively acting as a band-aid. Um, when I say acting like a band-aid, like for an innovative, uh, an innovative conference, the number of times that people talked about getting, uh, humans to fill out fields in a document or pdfs, or you know challenges with fax machines, like it was, it was wild.
Speaker 1:And so what I would say here is like again, it, it. It costs a lot less to do something right the first time than it does to incrementally fix it after you have something live and in play. And that like is triply important in the accessibility space. Um, because even in these instances, many of the reasons that people skip or miss fields is because actually there's really poor usability with those things, or you haven't considered what some of the accessibility issues that somebody might have with it are, and so the flip side of the opportunity of increasing usage is actually that there's like a cost to these mistakes that happen because you need to put a human in place to sort of bandage over the issue.
Speaker 2:So maybe, switching gears to advice, we can end the podcast with some practical advice. We have to end I'm enjoying it, I know, I know I'm sorry and I apologize to all the listeners who are like, oh, aren't we going to just keep going all afternoon. And I apologize to all the listeners who are like, oh, aren't we going to keep going all afternoon. So, contemplating two worlds, right. One, there's a lot of PSPs that are launched and running right, and there's a lot of folks who are thinking about launching and standing up with PSP.
Speaker 2:So, for the ones that are launched and running, you mentioned a lot of these band-aids that are happening and you're sort of throwing bodies on top of problems. It feels like stepping back and trying to understand what are the problems that you're trying to solve with all of this extra sort of human capacity and then looking at the root of those problems feels like an exercise that's worthwhile. But what would you do with clients? Or can you give examples of where Normative has been brought in to a PSP program that you didn't design, that you went through a process to evaluate and move that program into a place of, I think, more accessibility, better accessibility that had an impact? What would you recommend or what have you done when evaluating those programs that are already in market?
Speaker 1:Yeah. So first thing and really important thing to say is that, while this may feel like optional right now for anybody who's like operating a PSP in Ontario, specifically not to make people a little bit worried, but back in 2005, there was an act that was put in place provincially. No-transcript, I mean, I'm going to, you know, pause, pause.
Speaker 2:For dramatic effect there, because it's great that they've given us 20 years to prepare, but I don't know when this podcast is going to to be put out.
Speaker 1:Yeah, by the time it launches, we're down to like a few days, yeah, yeah, so there's a little bit of an urgency. Um, basically, the province has stated exactly what those standards are and you know, I'll be honest, um, there are some concerns about the enforceability of all of this, but it does come with a $100,000 a day fine for basically like breaking certain rules. So there is a little bit of urgency there to at the very least make sure that you are up to a certain level of standard. And even if the province doesn't enforce all of these sort of all of these rules, what you can expect is that we sort of saw this pattern in the US happen people get litigious and reputations absolutely get dragged through the mud in the instance that there are accessibility issues. So I would say right away there's a little bit of urgency to do it.
Speaker 2:And we've seen that in the US with the ADA and almost sort of like citizen enforcement and activism, driving and exposing, like you know, really big brands who are in contravention of the ADA, absolutely so.
Speaker 1:There are tons and tons of examples of doing this. Again, I can't, I can't. I have no crystal ball in front of me, but the pattern has presented itself. So what can folks do about it? I mean, it starts with action, and our starting point at Normative is always basically to develop a really simple patient profile. So typically what we go through the process of doing is we basically look at the condition, the indication that we're working in, we go to the medical literature and we say, okay, based on the symptoms that we expect somebody to have, here are the list of barriers that we should be considering and here are the associated rules and best practices that we should follow in order to get up to standard.
Speaker 1:Now that might sound like a lot of work but honestly, as sort of like big believers in the importance of this type of work, we intentionally sort of built it out so that it's relatively fast and if anybody wants to just reach out and talk about it, happy, happy to. But that's really the beginning point. And why that's a beginning point for both PSPs that are already in place and in market and for newly developed ones, is because that really gives you a starting point to be able to look at and immediately see what are the types of accessibility issues that somebody that I'm trying to serve are likely to have. So to the previous discussion of everybody needs requirements or they're going to design for themselves. This is how we get requirements in place as quickly, easily and painlessly as possible so that anything new that gets added into your program at least gets considered.
Speaker 2:And without naming names. Can you give an example of where you were engaged? You looked at literature, you contemplated the use cases, the patient profiles and came up with practical changes. Can you give an example of what that led to in terms of evolving a PSP?
Speaker 1:Yeah, absolutely so literally just sort of finished up a program like this, specifically in a couple of rare diseases, where we went through the process of creating the profiles, we put them in the hands of patient engagement teams so that they could then sort of put that over to a number of their different agencies, and then we worked directly with the internal teams who were developing a series of different touch points for their PSP. So we did basically a heuristic audit using these profiles in order to be able to identify a whole bunch of just very tactical accessibility barriers that currently existed. Interestingly enough, in a couple of instances where these folks were using sort of third-party tools, we actually even identified that the third-party tools that they were using across a whole bunch of their different websites which of course mean that a whole bunch of different patients were impacted by them had accessibility issues. So what's great is that kind of stuff basically cascades across a whole bunch of different touch points. Even sort of more interesting from that as part of it, we did an audit of the brand guidelines and actually identified that there were a whole bunch of accessibility issues literally directly within the brand guidelines themselves, and so because of that, you know you think about where a brand book, for example, cascades to a whole bunch of different touch points and agencies.
Speaker 1:You know, there again, by being able to correct that and being able to push that out to all the different partners who are using it, it very quickly sort of gets to the root cause of some of these design challenges that are likely to occur. So you know, in accessibility I like to say silence is the best outcome if that makes sense, because nobody is upset, nobody is complaining and nobody's raising issues. And so since doing that and adjusting some of these touch points and there have been dozens of corrections now as a result of sort of going through this process we've definitely seen sort of a really significant drop in the number of people who have been using, in particular, the call center as a key point of contact. Interesting, Interesting.
Speaker 2:I hate to do this because any move to wrap up the conversation is going to feel like a cold cut because I still have like 100 questions but we only have so much time For folks that want to keep this conversation going. But replace me and talk to you directly. How do people find you? How can they reach out?
Speaker 1:Absolutely. So you can definitely get a hold of me over LinkedIn. It's Patrick Glinsky. I post a lot about different topics related to startups, entrepreneurship and accessibility, and, of course, you can get me at Patrick at normativecom. This is one of my favorite topics to talk about and I believe so much in the sort of patient-centric movement that has been happening over sort of the last several decades. So if you're interested in accessibility or about how to sort of bring people living with chronic diseases closer into your processes, please reach out. We're going to have a great conversation, at the very least.
Speaker 2:That passion has come across loud and clear in this conversation. I appreciate it. I'm sorry that we had to bring it to a close. I've really enjoyed the conversation. Thanks so much, Patrick.
Speaker 1:Awesome. Thanks, Neil.