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.
Speaker 1: Hi everyone, I'm Patrick Galinsky, president at
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Normative.
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Speaker 2: Patrick, thanks for joining us today.
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Speaker 1: Thank you very much.
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Thrilled to be here.
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Speaker 2: You and I have known each other for maybe a couple of
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years now, and over the last couple of years I have come to
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understand that you have many, many, many, many vocations when
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it comes to your professional life.
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Today we're going to focus in on the normative part of your
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world.
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We could kind of do a hat trick of podcasts with all the stuff
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that you've got going on, but we're going to focus a little
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bit on your role at Normative.
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We talk about patient support programs that you guys have done
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, but maybe situate us first in the world of Normative, talk a
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bit about Normative, the agency, what the focus is, and then we
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can jump off from there.
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Speaker 1: Absolutely so.
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Thanks so much, neil.
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First of all, normative.
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I like to think we're like the best kept secret in that we've
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been a Canadian innovation company for over 15 years.
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It's almost hard to sort of say that.
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So, normative, we're a human-centered innovation firm,
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which I know in and of itself is kind of like a mouthful
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statement.
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The way that I like to qualify it is.
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First, I like to define innovation, which for me, super
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simply, innovation is about remaining relevant and from my
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perspective, you kind of can't stay relevant unless people care
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about what you do.
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And so over a decade of helping , like different teams launch
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different types of products and services and experiences, you
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know what we've consistently seen is that when you're not
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creating things for the audience that you're actually designing
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them for, nobody tends to care about what you're actually doing
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.
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So you know why we sort of bring together this idea of
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human-centered innovation is basically because, like, we want
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to understand your audience, what your audience cares about,
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and then we want to make sure that you're relevant for that
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audience, and we do that by designing different types of
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products and services and experiences.
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So you know, sort of end-to-end what that typically looks like,
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that typically looks like is we spend time getting to know your
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customers, what their needs are , and then we actually have a
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team that's focused on designing minimum viable solutions so
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that we can as quickly as possible test, validate and
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iterate based on what we think the hypothesis around what you
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should build should be, so that we can de-risk the process of
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bringing anything new to market.
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And this whole approach kind of came from years of working with
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both corporate innovation teams and startups, and the big
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difference between the two is classic corporate innovation
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team.
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What they tend to do is they tend to set a plan.
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It's like I've got this business objective, I'm going to
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introduce a new idea, I'm going to bring it to market with the
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marching orders of what this year's budget planning cycle
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looks like and you contrast that with what a startup looks like.
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Startups beg borrowing and stealing for every dollar that
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they have and if they see that something isn't working, they
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get the heck out as quickly as possible and pivot it really
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fast so that they can try and figure out what product market
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fit is.
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So you know, we sort of take that same philosophy from
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startups and bring it to corporate innovation teams and
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just try and find product market fit as quick as humanly
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possible.
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Speaker 2: Just reflecting on that, the human centered
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innovation, which is also kind of like the other side of the
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coin around some customer centricity you were talking
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about.
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It is amazing, is it not, how often brands or marketing teams
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come to an agency partner with a very self-serving mandate.
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The number of times I've said I get why you want that, why
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would your customers want that?
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Why do you think it's so hard for brands and brand managers
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who really spend their time in the service of both the end user
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and the brand, like they live at that intersection?
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Why do you think it's so hard often for them to come and give
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a brief or engage an agency partner with a very
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customer-centric mentality versus a very brand-centric
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mentality?
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Speaker 1: Yeah, so love the incredibly leading question
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because clearly you've got a perspective on it too.
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But I mean, look, my starting point of this is that
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unfortunately, the vast majority of brands and companies just
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aren't set up to innovate, right .
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So I'll go back to sort of get academic for a second.
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But, like Roger Martin introduced this incredible sort
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of model as he started talking about the concept of design
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thinking, where he sort of says, you know, every, every early
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organization starts with a mystery what's the big idea?
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That sort of sparks the introduction of the organization
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.
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Then you know, from mystery it gets to a point of heuristic,
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like we're starting to see some traction, we're starting to see
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some success.
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So how do we start to scale that?
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And you know, from a business perspective, start to improve
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the margins and how we approach it.
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And then you know, once it gets to a point where there's
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incredible success, it's like, okay, margins and how we
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approach it.
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And then you know, once it gets to a point where there's
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incredible success, it's like, okay, well, how do we turn this
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into an algorithm, a structured way of approaching things?
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And you know, in that sort of march from mystery to algorithm,
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what ends up happening is you become more and more focused on
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what's happening internally.
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You know, how do we make sure that we've got the right
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operational processes to set ourselves up for success, how do
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we improve the margins on things?
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And so, because of that, you've got this like organization
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who's starting to shift from an outside perspective to an inside
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perspective.
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And as that happens, you know, and it happens over years it's a
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gradual process and then, all of a sudden, what happens is
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there's either, you know, extra budget or you know an innovation
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mandate that comes from top down, or you start to see the
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erosion of market share and all of a sudden, everybody struggles
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because they're like, okay, well, we got to try something
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new, but you've actually redesigned the organization over
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the course of several years of incredible success to be focused
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in on not something new, but being really, really good at the
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old, and so I think that's a big reason why it happens.
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And when you think about an internal team and what it looks
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like to actually get innovation moving, you know a big part of
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it is okay, well, we need to, you know, state what we're
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trying to achieve from business outcomes perspective.
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We need to, you know, clearly, state ROI.
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We basically need to play a game that is designed against an
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operating business as opposed to an innovating business, and
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if you haven't done what you can to be able to maintain sort of
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what that innovation approach is , then it just becomes really
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hard to turn your gaze outside and you start to rely on the
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things that you have available to you, which is, you know, your
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classic competitive intelligence or secondary
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research.
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That is great to provide really , really big, high-level details
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, but isn't great to tell you why people should care about you
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existing.
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Speaker 2: We just had our Creativity Now conference last
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week and one of the things I was talking about there was this
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notion of innovation as a line item, where what is your
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innovation initiative this year, which by its very, which very,
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disintermediates innovation from what you do on a day-to-day
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basis and it almost it almost sort of casts everything else
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under this cloud of not innovative, because innovation
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happens over here and not on the side of your day-to-day work.
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And I used to talk to clients about the kind of notion of
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going from the couch to the court right, where basically you
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don't ask somebody who watches a lot of NBA to all of a sudden
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get in and play in the big leagues.
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And that's a little bit what happens, I think, with marketers
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, where there's no innovation kind of strength and muscles and
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talent that's being nurtured, but then all of a sudden, from
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the top down, you need to innovate or you need to have an
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innovation tactic.
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And that's a really tough spot to be, I think, for marketers,
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especially if they don't have an agency partner who's also got
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kind of incremental innovation in their DNA.
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Speaker 1: Yeah, I totally agree with you and I love your
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statement around the innovation checkbox because you know it's
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performance review time for a lot of our clients right, and
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you'd be surprised how often.
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Well, I mean obviously you know now how often innovation is
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truly a checkbox, and what I find interesting about sort of
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that concept is that implies it's a one and done, and so many
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times when we actually think about our like broader set of
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tactics, somebody thinks, oh, I've got this big strategy, I
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need one tactic underneath it.
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I'm going to check a box and it's going to be complete.
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Well, the reality is is like, if that strategy is the biggest
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route to success, well you should keep checking a whole lot
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more boxes and cover it off as much as possible instead of
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moving on to something else entirely.
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And so you know, to me, the idea of an innovation checkbox,
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yes, I do believe that teams need some type of push or
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mandate to make sure that innovation remains top of mind
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and relevant.
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But it's not one thing.
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It's like really truly a set of cultural activities that needs
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to be embedded in the design of the organization.
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If I can tangent for one second , because it's kind of
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interesting, weirdly enough, my whole sort of philosophy around
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how innovation management works actually started when I was a
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summer intern at a financial services company, if you can
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believe that.
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Speaker 2: Oh, the hotbed, hotbed of innovation is
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financial services and being an intern.
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So, yes, go tell me.
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Speaker 1: Can you imagine it?
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So the first real job I had not that being a camp counselor and
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selling snowboards wasn't a set of real jobs, but I was
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actually doing a series of summers at a company called MBNA
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Canada.
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Mbna invented the idea of the endorsed credit card, so for
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everybody who gets their university credit cards or their
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law firm credit cards.
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They invented the concept of it and they actually had a program
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that they had built internally called their Masterpiece program
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Now Masterpiece, maybe you could refer to it as a checkbox
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if you want to.
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But across the entire organization they basically said
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it is everybody's responsibility to innovate and
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we are going to put a structured program in place that is
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embedded in how we operate as a company.
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That is our commitment to innovation.
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So literally everybody across the company, including everybody
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working in the call centers, everybody who was working in
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collections or scoring credit papers they had this little
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plaque on their wall that said the number of ideas that they
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had submitted into the program.
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Every quarter you were reviewed and you were asked how many
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ideas you had submitted in.
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And you might think, oh, submitted, that's very much a
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checkbox.
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But there was the other side of it where they actually had a
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manager literally in place supporting the implementation of
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this program.
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So if you had an idea, you went to that manager and they
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actually helped to guide you through a structured innovation
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process.
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And I think it was on a monthly basis.
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All of the executive leadership , monthly basis, all of the
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executive leadership sat and reviewed all of the ideas that
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moved through and people were bonused and promoted based on
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their commitment into this program.
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So again you can look at that and be like, oh, that's very
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getting things done, boxes and arrows types of approach to
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innovation.
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But actually when I look back on that, it is one of the best
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examples of embedded organizational commitment to
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innovation with the right structural support and truly
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encouraging everybody to do it.
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Now my idea that I submitted and got paid for was to buy the
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mbnacanadaca domain.
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Um, so you can see how long ago that was.
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I'm aging myself.
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But uh, but, uh, I got one through.
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I got bonus based on it.
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Uh, I got a high five and a handshake, uh, and it was
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incredible.
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And then now on the url, think about how much that well it's,
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it's worth nothing now because they ended up getting bought by
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bank of america and then TD.
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So I think the MVNA name is long gone, but I can tell you
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the the impact that that program had on me.
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And again I've I've now helped to implement innovation programs
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in.
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You know I I'm not sure if I'm allowed to name off all the
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names, but a big luxury hotel chains, a big consumer package
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goods companies, lots of pharma companies as well, and that
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embedded philosophy still sticks with me with every program I
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get involved in.
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Speaker 2: Do you have any advice for the marketers that
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are listening or the agencies that are listening, who work in
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an environment where innovation is a checkbox but they want to
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sort of embed incremental innovation into their day-to-day
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?
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I appreciate that part of it is just a way of thinking, but do
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you have any ways of doing that you've found helpful for people
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who want to make that shift to?
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How am I thinking more innovatively and how am I
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looking at this a bit more multi-dimensionally than kind of
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innovation is the thing that I check off before my review gets
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completed.
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Speaker 1: Absolutely so.
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First thing I want to say is like I started into the
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innovation consulting space and when I say innovation, like pure
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innovation consulting at least 15 years ago.
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And what was interesting is, over that period of time,
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actually innovation as a word has had good days and it's had
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bad days because at different points in time, for some
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innovation in those early days was about creativity, for others
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it was about putting a whole bunch of post-it notes in a room
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and then it was about ideas and then everybody hated innovation
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because nobody actually knew how to implement it and build
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businesses within corporate teams.
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So I mean, first thing I'll say is like ignore the word
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innovation, because the word innovation is kind of
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meaningless, because it can mean everything, it can mean nothing
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.
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It can be great in some organizations, it can be quite
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sour in others.
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So I'll go back to this idea that innovation is ultimately
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about an organization remaining relevant.
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And if you as a marketer or somebody on the agency side
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wants your client or your own organization to remain relevant,
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I mean that in and of itself is sort of the first emotional
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push that sort of suggests okay, you are an innovator, now you
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need to figure out how to navigate the structure and,
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unfortunately, organizational politics to get there.
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Now you wanted to talk about innovation.
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I want to talk about politics because you have to understand
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that true innovation work brings those two things together
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incredibly closely, usually under the lens of organizational
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change management Again, super unsexy topic.
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Why kind of all this matters is because innovation is kind of
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like a strategic approach to achieving something for an
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organization, and the first thing that I say whenever I'm
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working with a team who wants to you know, air quote get
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innovative is, I say, weaponize the organizational mission
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statement.
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So start at the very top with the organizational ethos and,
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ideally, what the major critical success factors or, you know,
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kpis or organizational objectives are for the year, or
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organizational objectives are for the year.
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Because when you start with that and you start to find
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innovation programs or activities underneath that or,
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pardon me, that help to support or service that, it becomes
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really difficult for your managers and senior individuals
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to say, oh no, this doesn't fit.
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So I'll contrast that with what I see a lot of the time.
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A lot of the time, people come up with really great ideas and
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they're like why can't I get this through internally?
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Well, the reason you can't get it through internally is because
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there's a whole bunch of set processes that the organization
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is literally designed to support .
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Back to that, like down to an algorithmic level, in order to
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make the company work successfully.
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And so, instead of swimming against, instead of thinking
00:16:03
that, oh, an innovator needs to be different or needs to be
00:16:06
outside, actually you need to figure out how to leverage the
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we'll call it what it is bureaucracies that are in place
00:16:13
in order to successfully get your thing supported.
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And then you need to find very senior leadership to be able to
00:16:21
support it.
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Last thing I'll say and I can't say who it was, but in the past
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I worked with one of the big management consulting firms
00:16:32
building literally their own internal innovation process, and
00:16:35
we put all this work in place and able to build out a proper
00:16:40
innovation function classic idea sorting, idea gating, review
00:16:46
committees, et cetera.
00:16:48
We put that all in place and then started working with a
00:16:50
bunch of the senior partners there, and what we found was
00:16:53
they were happy to send all of their junior team members
00:16:56
through that type of process, but for themselves they knew how
00:16:59
the money worked, and we always sort of say innovation travels
00:17:02
the path of least resistance.
00:17:04
So for those senior folks, they figured out how to unlock
00:17:07
budgets for the things that they wanted to work on, and so those
00:17:10
things happened.
00:17:11
So the other part of it is yes.
00:17:13
Number one make sure you weaponize the organizational
00:17:16
mission and the organizational KPIs to support what you're
00:17:19
trying to do, because it's hard to say no to it.
00:17:21
Number two know how money flows internally, just like if you
00:17:25
were working at a startup.
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You live and die based on your ability to be able to find and
00:17:29
navigate the finances to keep yourself up and running.
00:17:32
You need to be able to figure out how to navigate your own
00:17:36
internal budget processing, and that's not just to kick off your
00:17:39
program, that's to make sure that you have the right support
00:17:43
and understanding of what the gating criteria all the way
00:17:45
through to launch actually is.
00:17:47
Thank you.
00:18:23
Speaker 2: And one of the things that I think about, you know,
00:18:24
when I used to run the agency, is that I would say to the team,
00:18:28
if we were coming up with a campaign or an asset or an idea
00:18:30
for a client, is what about this excites you from the
00:18:35
perspective of the audience?
00:18:37
Right?
00:18:37
What is the thing that you're excited about that you think is
00:18:39
brave?
00:18:40
That's different.
00:18:41
And then empower your clients with the vocabulary to help sell
00:18:48
that in, like get the clients excited about how this will make
00:18:51
a difference for the audience and then help them with the
00:18:54
vocabulary that will resonate with their managers or finance
00:18:59
or whatever, to be able to get to a yes, which I think is
00:19:02
consistent with that, being mindful of that organizational
00:19:06
friction.
00:19:06
Speaker 1: Yep, and I would add to that, not to overcomplicate
00:19:11
things, but every organization has a different decision-making
00:19:14
process and back in some of my earlier innovation days we used
00:19:18
to use the heuristic part strings and purse strings.
00:19:22
Basically, we need to figure out how to communicate why an idea
00:19:26
should move forward, on one hand , with emotional resonance and,
00:19:31
on the other hand, with that sort of organizational KPI
00:19:34
alignment.
00:19:35
And guided by something as simple as that, I would say we
00:19:40
had a lot of success.
00:19:41
The one piece that I want to add to that, and maybe something
00:19:44
that I should have added into the previous comment, is just
00:19:48
that I would say the vast majority of people want
00:19:52
predictability in their lives, if that makes sense.
00:19:54
You want to get up, you want to go to work, you want to know
00:19:57
what needs to be accomplished today, and what's interesting
00:20:01
about innovation, and innovation programs in particular, is it
00:20:05
often sort of like throws this wrench of unpredictability into
00:20:08
things which, for a small percentage of the population, is
00:20:12
really exciting and for the vast majority of the population,
00:20:15
it's terrifying, it's scary, it's disruptive.
00:20:19
And so the other, like a little bit of advice that I would give,
00:20:22
and it is like make it not scary.
00:20:26
Even if you think this is like the wildest, most different,
00:20:31
most unique thing that has ever happened in your you know
00:20:36
industry or category, ever happened in your industry or
00:20:42
category, communicate it differently.
00:20:43
Do not make it scary or too big, because at some point you're
00:20:45
going to have a purse strings person in front of you who's
00:20:48
looking at it solely through the lens of rationale and thinking,
00:20:52
okay, this is too much to tackle, given everything else we
00:20:56
have going on.
00:20:57
So, you know, innovation is, in and of itself, about like
00:21:02
trying new things, and so that can feel really risky.
00:21:06
You don't want organizations to feel like what you're trying to
00:21:09
do is risky, and that's a big reason why, again, I kind of
00:21:15
think of innovation like it's not a one thing.
00:21:16
It's a big reason why, again, I kind of think of innovation
00:21:18
like it's not a one thing.
00:21:18
It's a company needs to be managing a pipeline, because you
00:21:23
have to think of it like there's a portfolio and some
00:21:26
things are going to hit and some things aren't going to hit, and
00:21:28
we just need to be really intentional about how we sort of
00:21:32
like manage all of these different things together.
00:21:35
Speaker 2: I think that if the original stakeholder so the
00:21:39
brand manager or the head of the innovation team or whoever that
00:21:42
person is is more anxious than excited about a certain idea,
00:21:49
they are going to communicate as much anxiety as excitement to
00:21:53
whoever is up the food chain or beside them, and that next
00:21:57
stakeholder will feel that and likely there will be even less
00:22:02
excitement and more anxiety, and on it goes until the final
00:22:05
person that has to say yes is really probably getting not much
00:22:09
other than all of the anxiety right, so-.
00:22:12
Speaker 1: I could not agree more.
00:22:13
And I might even add look, at some point you're going to have
00:22:18
a bunch of decisions to make around what to move forward and
00:22:21
what to not move forward, and your innovation is probably
00:22:24
going to be compared against the potential returns of something
00:22:28
that's very familiar from an operating perspective.
00:22:32
Every business decision, no matter how rational people try
00:22:37
and make it, there is an emotional component to it and
00:22:41
there is personal bias that comes into play around it.
00:22:44
And so to exactly your point if there is anxiety there, it's
00:22:48
going to show up in a score and it is going to impact whether
00:22:52
things move forward.
00:22:53
And it sounds weird to tangent this meal, but or sorry to like,
00:22:57
bring it back to the core topic of human centered design.
00:23:01
But like, this is why at Normative we call ourselves a
00:23:04
human centered consulting firm, because everything we've just
00:23:08
talked about is human behavior has been about how organizations
00:23:14
make decisions about innovation .
00:23:17
But unless you are intentional and understanding, like, what
00:23:21
are the needs of here, your internal stakeholders to support
00:23:24
innovation, then you're not going to get something through.
00:23:26
So you know, from an innovation process, design perspective, or
00:23:31
like trying to get something sort of past the goalie, an
00:23:34
innovator has to think about these both sides.
00:23:37
What does like?
00:23:38
What am?
00:23:38
I has to think about these both sides.
00:23:39
What does like?
00:23:43
What am I trying to bring to market for a customer?
00:23:45
And then what am I asking the organization to let me do in
00:23:46
order to bring that thing to the customer?
00:23:47
And that's why innovation is so tricky.
00:23:50
Speaker 2: See, Patrick, it wasn't a tangent, it's just.
00:23:53
It's just the narrative arc that I'm able to create as a
00:23:56
master podcast host.
00:23:57
To bring it back to normative, which is exactly what I was
00:24:01
going to do, but you did it for me Amazing.
00:24:03
So situating ourselves back in normative for a second that I
00:24:20
want to touch on as a jumping off point to talking about
00:24:21
patient support programs and some of the work you're doing
00:24:22
around accessibility with respect to patient support
00:24:23
programs is you know, you described Normative as
00:24:28
developing solutions.
00:24:30
Maybe sort of break that down a little bit.
00:24:35
What exactly does that mean?
00:24:37
Sounds cool, but what kind of solutions?
00:24:41
Can you give folks an example or two so that they can kind of
00:24:46
plug it into their brain a bit?
00:24:48
Speaker 1: Absolutely so.
00:24:49
I mean first thing, I'll say, because we're putting this under
00:24:52
sort of a lens of innovation.
00:24:54
It means that there's going to be something new that's created.
00:24:58
When I say building something new, a lot of the times,
00:25:03
basically, organizations will come to us and say, okay, well,
00:25:06
we have our core thing that we're doing.
00:25:09
Now.
00:25:09
What we want to do is find a new line of business to be in or
00:25:13
a new area of our business to be in.
00:25:15
We're introducing a new service to add on to our current state
00:25:20
patient support program to help to support our business schools.
00:25:24
So this is why it's the curse of the solution word.
00:25:28
You know, sometimes we're building digital products,
00:25:31
sometimes we're building support apps, sometimes we are building
00:25:34
literally like health services, and in a number of instances we
00:25:39
have built startups from the ground up, the sort of
00:25:43
consistent piece around.
00:25:44
That is number one we're always making sure we understand, like
00:25:49
, what are the people on the other end of the service
00:25:51
actually in need of?
00:25:52
Number two we're then really clarifying what's the value
00:25:53
proposition of the thing that we're trying to bring to life.
00:25:55
And then number three we're then really clarifying what's
00:25:56
the value proposition of the thing that we're trying to bring
00:25:58
to life.
00:25:59
And then number three we're figuring out how do we test and
00:26:03
validate that value proposition literally as quickly and as
00:26:07
cheaply as possible, because ideas are not precious.
00:26:12
It's the execution of them that is precious, and we want to
00:26:15
systematically de-risk bringing anything new to market.
00:26:19
So what that ends up looking like is, as an example, we've
00:26:25
worked with a number of big financial services institutions
00:26:28
to help create sort of new product lines with them.
00:26:31
In the healthcare and pharma space more specifically, we've
00:26:36
partnered with medical device startups to clarify the value
00:26:40
proposition and do testing in hospital With pharma teams.
00:26:44
Specifically, we've built medical tracking apps that have
00:26:48
ended up being spun off into separate standalone businesses.
00:26:52
So I'd say the types of outcomes vary, because when you
00:26:57
start an innovation program, you don't know what you're building
00:27:00
quite yet.
00:27:00
But what's consistent is understanding what people need,
00:27:05
figuring out how to turn that into a clear value proposition
00:27:07
and then making sure that we're bringing together the right team
00:27:10
in order to build, test and cut things as quickly as possible
00:27:15
if they're not performing.
00:27:20
Speaker 2: Thank you, that helps .
00:27:21
Also a big answer.
00:27:21
So I'm going to use the understanding what people need
00:27:27
as the segue into talking a bit about patient support programs.
00:27:33
So you spoke recently at the Patient Support Summit, which I
00:27:37
understand is a great event If folks who are listening have a
00:27:41
patient support program as part of their mandate.
00:27:43
You should check out the Patient Support Summit and I
00:27:46
thought it was interesting.
00:27:47
You and I actually chatted a little bit before the
00:27:49
presentation about this topic, but you talked about designing
00:27:54
for accessibility in patient support programs, which I think
00:28:01
listeners might immediately assign a definition to
00:28:08
accessibility within the context of a patient support program,
00:28:12
but I think that you're thinking about it a little bit
00:28:15
differently.
00:28:15
So talk to me about what does accessibility and its ability to
00:28:20
transform your patient support programs.
00:28:22
What does that mean in your world?
00:28:24
Speaker 1: Yeah, definitely.
00:28:25
So first thing, I totally agree with you because obviously I
00:28:28
talked to a lot of PSP leads about the topic of accessibility
00:28:32
and the first thing that comes to their head is like, oh,
00:28:36
you're talking about web compliance.
00:28:39
Yeah, increasing the font Screen readers and fonts and ramps and
00:28:45
look, what I would say is all of those things are sort of like
00:28:48
touch points of accessibility.
00:28:51
But there's a much bigger and kind of more strategic topic
00:28:55
that sits over top of it, which is sort of like the broader
00:28:59
strategic intent of what accessibility actually means.
00:29:01
So you know, for us accessibility is really about
00:29:06
allowing people to show up in whatever way, shape and form
00:29:10
they are, and to experience and experience through that.
00:29:14
And this is actually like super important when you think about
00:29:18
PSP design, because, like whenever a team creates a PSP,
00:29:24
you're creating it to support the experience of your
00:29:28
medication.
00:29:28
Again, we'll sort of like pragmatically call it what it is
00:29:32
.
00:29:32
I know we can't always talk about it in the sort of
00:29:34
boardrooms, but adherence, compliance, are two words that
00:29:39
get talked about a fair bit and PSPs consistently show to
00:29:46
increase adherence somewhere in the area of 70%.
00:29:49
So your PSP lead, you are building your PSP to help to
00:29:54
support the experience of your medication.
00:29:56
But here's where things sort of start to fall down from an
00:29:59
accessibility perspective.
00:30:00
Starting point 25% of all Canadians live with some type of
00:30:05
disability.
00:30:06
So already right at the gate, one in four of the patients who
00:30:10
experience your PSP will have some type of you know what I'll
00:30:14
call sort of like air quote classic disability, where they
00:30:17
might have visual impairment, they might have a motor issue,
00:30:20
they might have a cognitive issue.
00:30:21
But already that means that, okay, one in four people will at
00:30:27
some point, when they're intersecting with the different
00:30:30
touch points of your PSP, have some type of barrier.
00:30:33
Okay, so that already starts to rationalize why accessibility
00:30:38
is something important.
00:30:38
But let's go a couple steps deeper.
00:30:42
So a couple years ago, Microsoft's Inclusive Design Lab
00:30:47
basically introduced the concepts of situational and
00:30:52
temporary disability.
00:30:53
So if you think of a classic disability is missing an arm,
00:30:59
now let's go to a temporary disability.
00:31:01
Well, somebody has a broken arm .
00:31:03
In that instance that person has the same disability.
00:31:07
It will not last forever, but still, when they show up and
00:31:09
intersect with your, your PSP touch point, they have that type
00:31:14
of barrier.
00:31:14
Let's go a step further and say situational disability.
00:31:19
Okay, you have a woman who's holding a baby or holding bags.
00:31:25
You know, in those instances again, there is this instance of
00:31:29
barrier that occurs for that individual.
00:31:32
And so, you know, microsoft sort of, through this philosophy
00:31:36
, sort of says you know, you should actually think of 100% of
00:31:41
the people who will interact with any service that you create
00:31:44
as somebody who may, in that moment, have a disability, and
00:31:48
all of a sudden it really like that data really sort of changes
00:31:52
your perspective on how you should approach the overall
00:31:55
design of the experiences that you provide.
00:31:58
And this is sort of like the big foundation of why the
00:32:02
inclusive design sort of movement is so critical to
00:32:06
consider as part of PSP design.
00:32:08
So now let's go one more step further.
00:32:11
Even I would argue and again, I've now done, you know, in my
00:32:18
career, north of 50 different ethnographic studies on
00:32:22
different chronic disease experiences.
00:32:24
I have spent a lot of time co-designing with people living
00:32:29
with different chronic diseases.
00:32:30
We think about any condition that pops up.
00:32:40
There is the physical limitations that happen, but
00:32:41
also psychosocial considerations that actually get left off of
00:32:44
any discussion around how to actually design a PSP.
00:32:47
The very simple one, you know, at the PSP summit last week,
00:32:52
what kept coming up and people kept talking about was oh, you
00:32:55
know, there's a mental health crisis right now and people
00:32:59
living with different chronic diseases are experiencing a lot
00:33:02
of mental health issues right now.
00:33:04
Well, you know, I would say a lot of folks will say that and
00:33:08
it's sort of like a lip service, comment to it an
00:33:11
acknowledgement that it is true, but not really action against
00:33:13
it, and what I would suggest is okay.
00:33:15
Well now, if, for example, we're dealing with a condition
00:33:19
like psoriasis very, very simple example where I've done
00:33:22
qualitative research in the past when I spoke to patients with
00:33:25
psoriasis, what I heard is that you know many of the people that
00:33:31
I spoke with if they even had the smallest percentage of
00:33:34
psoriasis that was visible on their skin, they were
00:33:39
experiencing some pretty traumatic mental health issues,
00:33:46
definitely large degrees of social isolation, depression, et
00:33:50
cetera.
00:33:50
Now, if you're designing a PSP program and it requires you to
00:33:55
go into a clinic, for example, you're now basically asking a
00:33:59
whole bunch of people who are really struggling with aspects
00:34:03
of mental health to go out in the world.
00:34:06
That's a different type of trauma.
00:34:08
Speaker 2: And do the thing that is causing them the most
00:34:10
anxiety.
00:34:11
Speaker 1: Exactly so.
00:34:12
You have all these stacked considerations and this is where
00:34:15
I sort of say it's so critical, as a PSP leader, to number one,
00:34:20
understand that it is very likely that the vast majority of
00:34:24
the patients that your program is in place to support are, at
00:34:29
some point, when they're interacting with the program,
00:34:31
going to experience some type of physical disability and or
00:34:36
psychosocial disability.
00:34:37
If that's the case, well, you need to be considering that in
00:34:41
the design of your programs.
00:34:43
And what we have also consistently seen and heard is
00:34:46
that actually the PSP suppliers, they need good requirements,
00:34:51
and in the absence of good requirements, as a designer, I
00:34:53
know I end up designing for myself, and so you know, with my
00:34:58
team at Normative, what we've been really working on is
00:35:01
working with teams to understand what are the different physical
00:35:05
and psychosocial considerations that come when you're living
00:35:09
with a specific chronic illness and how can we actually define
00:35:12
that into a really clear set of requirements that allows a PSP
00:35:16
supplier or an agency to be able to build at touch points that
00:35:19
actually consider these things.
00:35:20
Yeah, again, long answer.
00:35:24
Speaker 2: Sorry about that.
00:35:25
Good, all the answers are long and good, that's good.
00:35:29
Well, you mentioned that this sort of stacked considerations,
00:35:32
and I think I mean, like you know, think about Maslow's
00:35:37
hierarchy of needs like food, shelter, whatever heat on the
00:35:41
bottom of the hierarchy, and for some PSPs the bottom of that
00:35:50
hierarchy is just really simple, barriers to access.
00:35:55
I mean, you say you know designing these programs for
00:35:58
yourself.
00:35:59
You think about the people who are in a room.
00:36:01
They're often sitting with a fair degree of privilege, you
00:36:05
know work in a job where they can pop out to pick up their
00:36:09
prescription or go to an appointment, have, you know, a
00:36:13
spare laptop at home and high speed internet and you're just a
00:36:16
whole bunch of of, of, um, uh, you know, a whole bunch of
00:36:21
access and and ability that that a lot of folks just don't have.
00:36:26
It struck me, I remember during the pandemic that, um, you know,
00:36:29
one of my um you know sons was, was, uh, in the TDSB and the
00:36:33
TDSB sent a note out, um, you know, acknowledging that that a
00:36:37
massive proportion I can't remember what the number is a
00:36:39
massive proportion of students in the TDSB don't have access to
00:36:43
internet at home.
00:36:43
The only internet they get is on a phone or a shared device
00:36:50
and it was a huge impediment to getting kids into online
00:36:56
learning or asynchronous learning.
00:36:57
But it really struck me because I don't think in all of my
00:37:03
years of designing digital solutions did I maybe
00:37:07
internalize that reality as I think deeply important, as I
00:37:13
should have.
00:37:13
And if I go back to your earlier stat of you know,
00:37:17
adherence increases by 70% by a good PSP.
00:37:21
Speaker 1: Adherence increases by 0% if somebody can't access
00:37:25
your PSP tens, hundreds of thousands of hours many of the
00:37:42
PSP teams actually put in in order to originally architect
00:37:43
their program right.
00:37:43
It's huge and it's incredibly complex.
00:37:45
It's all built under an assumption that people are going
00:37:48
to actually use the thing and so you know, our whole
00:37:52
perspective is okay if you're going to put in that effort.
00:37:56
Perspective is okay if you're going to put in that effort one
00:38:01
let's maximize the likelihood that somebody is able to
00:38:03
successfully access it, because you certainly didn't put it in
00:38:05
place just so nobody could be able to use the things or
00:38:10
leverage the things.
00:38:11
I think the other part is PSP building is a team sport and so,
00:38:16
as a know, as a PSP manager or leader like, you're really the
00:38:21
hub with a whole bunch of different spokes, and each of
00:38:24
those spokes is a designer who, in the absence of good
00:38:28
requirements, will design for themselves.
00:38:32
It's a funny bridge back to the innovation discussion, but you
00:38:37
know, certainly being around a lot of pharma innovation teams,
00:38:40
what keeps popping up is like teams are really excited to work
00:38:42
on digital solutions, digital apps, technology, ai stuff.
00:38:46
But you know, you go out into the patient community and the
00:38:50
vast majority of patients are still being served in what I
00:38:53
would call very, very traditional ways.
00:38:56
You know paper documents, these types, these types of things,
00:39:01
and like their ability to use and leverage them.
00:39:04
One like is still pretty low content.
00:39:09
We've talked a lot about content in the past.
00:39:11
Like content is what it is.
00:39:13
Often, especially in Canada, content is English and French,
00:39:16
so you've got over 40 other languages that are totally
00:39:21
unserved, which is a set of patients that could be on your
00:39:23
therapies, could be supported by your PSPs, but instead have no
00:39:26
access.
00:39:27
Speaker 2: Yeah and sorry, depending on the therapeutic
00:39:29
category.
00:39:29
Not could be, but maybe over-indexing in some of those
00:39:34
communities that are very underserved right.
00:39:39
Speaker 1: Yeah, so totally agree with that.
00:39:41
And just one more point.
00:39:42
Actually I guess technically two more points to add over top
00:39:45
of this, it might be three actually, patrick, can't help
00:39:48
myself.
00:39:49
I love my numbers, I love my letters.
00:39:51
So last week, at the PSP summit , one of the other things that
00:39:56
we kept hearing about was that, you know, psp costs are out of
00:40:00
control, which I can totally appreciate.
00:40:02
Now, one of the reasons that they're so out of control is
00:40:07
because, obviously, it's incredibly high cost to continue
00:40:10
to add staff into PSP management who are effectively
00:40:14
acting as a bandaid management, who are effectively acting as a
00:40:19
band-aid.
00:40:19
Um, when I say acting like a band-aid, like for an innovative
00:40:20
, uh, an innovative conference, the number of times that people
00:40:23
talked about getting, uh, humans to fill out fields in a
00:40:27
document or pdfs, or you know challenges with fax machines,
00:40:31
like it was, it was wild.
00:40:34
And so what I would say here is like again, it, it.
00:40:37
It costs a lot less to do something right the first time
00:40:41
than it does to incrementally fix it after you have something
00:40:45
live and in play.
00:40:46
And that like is triply important in the accessibility
00:40:51
space.
00:40:52
Um, because even in these instances, many of the reasons
00:40:55
that people skip or miss fields is because actually there's
00:40:59
really poor usability with those things, or you haven't
00:41:02
considered what some of the accessibility issues that
00:41:04
somebody might have with it are, and so the flip side of the
00:41:09
opportunity of increasing usage is actually that there's like a
00:41:12
cost to these mistakes that happen because you need to put a
00:41:15
human in place to sort of bandage over the issue.
00:41:20
Speaker 2: So maybe, switching gears to advice, we can end the
00:41:25
podcast with some practical advice.
00:41:27
We have to end I'm enjoying it, I know, I know I'm sorry and I
00:41:32
apologize to all the listeners who are like, oh, aren't we
00:41:35
going to just keep going all afternoon.
00:41:36
And I apologize to all the listeners who are like, oh,
00:41:38
aren't we going to keep going all afternoon.
00:41:39
So, contemplating two worlds, right.
00:41:42
One, there's a lot of PSPs that are launched and running right,
00:41:49
and there's a lot of folks who are thinking about launching and
00:41:59
standing up with PSP.
00:41:59
So, for the ones that are launched and running, you
00:42:00
mentioned a lot of these band-aids that are happening and
00:42:01
you're sort of throwing bodies on top of problems.
00:42:04
It feels like stepping back and trying to understand what are
00:42:11
the problems that you're trying to solve with all of this extra
00:42:15
sort of human capacity and then looking at the root of those
00:42:20
problems feels like an exercise that's worthwhile.
00:42:24
But what would you do with clients?
00:42:28
Or can you give examples of where Normative has been brought
00:42:31
in to a PSP program that you didn't design, that you went
00:42:38
through a process to evaluate and move that program into a
00:42:43
place of, I think, more accessibility, better
00:42:47
accessibility that had an impact ?
00:42:48
What would you recommend or what have you done when
00:42:53
evaluating those programs that are already in market?
00:42:55
Speaker 1: Yeah.
00:42:56
So first thing and really important thing to say is that,
00:43:00
while this may feel like optional right now for anybody
00:43:04
who's like operating a PSP in Ontario, specifically not to
00:43:10
make people a little bit worried , but back in 2005, there was an
00:43:14
act that was put in place provincially.
00:43:16
No-transcript, I mean, I'm going to, you know, pause, pause
00:43:38
.
00:43:38
Speaker 2: For dramatic effect there, because it's great that
00:43:39
they've given us 20 years to prepare, but I don't know when
00:43:41
this podcast is going to to be put out.
00:43:42
Speaker 1: Yeah, by the time it launches, we're down to like a
00:43:43
few days, yeah, yeah, so there's a little bit of an urgency.
00:43:45
Um, basically, the province has stated exactly what those
00:43:49
standards are and you know, I'll be honest, um, there are some
00:43:52
concerns about the enforceability of all of this,
00:43:55
but it does come with a $100 a day fine for basically like
00:44:03
breaking certain rules.
00:44:04
So there is a little bit of urgency there to at the very
00:44:07
least make sure that you are up to a certain level of standard.
00:44:11
And even if the province doesn't enforce all of these
00:44:17
sort of all of these rules, what you can expect is that we sort
00:44:21
of saw this pattern in the US happen people get litigious and
00:44:28
reputations absolutely get dragged through the mud in the
00:44:31
instance that there are accessibility issues.
00:44:34
So I would say right away there's a little bit of urgency
00:44:37
to do it.
00:44:38
Speaker 2: And we've seen that in the US with the ADA and
00:44:42
almost sort of like citizen enforcement and activism,
00:44:49
driving and exposing, like you know, really big brands who are
00:44:53
in contravention of the ADA, absolutely so.
00:44:57
Speaker 1: There are tons and tons of examples of doing this.
00:44:59
Again, I can't, I can't.
00:45:00
I have no crystal ball in front of me, but the pattern has
00:45:03
presented itself.
00:45:04
So what can folks do about it?
00:45:07
I mean, it starts with action, and our starting point at
00:45:11
Normative is always basically to develop a really simple patient
00:45:15
profile.
00:45:16
So typically what we go through the process of doing is we
00:45:20
basically look at the condition, the indication that we're
00:45:23
working in, we go to the medical literature and we say, okay,
00:45:27
based on the symptoms that we expect somebody to have, here
00:45:33
are the list of barriers that we should be considering and here
00:45:37
are the associated rules and best practices that we should
00:45:41
follow in order to get up to standard.
00:45:44
Now that might sound like a lot of work but honestly, as sort of
00:45:48
like big believers in the importance of this type of work,
00:45:52
we intentionally sort of built it out so that it's relatively
00:45:56
fast and if anybody wants to just reach out and talk about it
00:45:59
, happy, happy to.
00:45:59
But that's really the beginning point.
00:46:02
And why that's a beginning point for both PSPs that are
00:46:06
already in place and in market and for newly developed ones, is
00:46:10
because that really gives you a starting point to be able to
00:46:14
look at and immediately see what are the types of accessibility
00:46:17
issues that somebody that I'm trying to serve are likely to
00:46:20
have.
00:46:20
So to the previous discussion of everybody needs requirements
00:46:24
or they're going to design for themselves.
00:46:25
This is how we get requirements in place as quickly, easily and
00:46:31
painlessly as possible so that anything new that gets added
00:46:34
into your program at least gets considered.
00:46:48
Speaker 2: And without naming names.
00:46:48
Can you give an example of where you were engaged?
00:46:50
You looked at literature, you contemplated the use cases, the
00:46:53
patient profiles and came up with practical changes.
00:46:59
Can you give an example of what that led to in terms of
00:47:03
evolving a PSP?
00:47:05
Speaker 1: Yeah, absolutely so literally just sort of finished
00:47:10
up a program like this, specifically in a couple of rare
00:47:14
diseases, where we went through the process of creating the
00:47:17
profiles, we put them in the hands of patient engagement
00:47:21
teams so that they could then sort of put that over to a
00:47:25
number of their different agencies, and then we worked
00:47:27
directly with the internal teams who were developing a series of
00:47:31
different touch points for their PSP.
00:47:33
So we did basically a heuristic audit using these profiles in
00:47:39
order to be able to identify a whole bunch of just very
00:47:41
tactical accessibility barriers that currently existed.
00:47:45
Interestingly enough, in a couple of instances where these
00:47:48
folks were using sort of third-party tools, we actually
00:47:51
even identified that the third-party tools that they were
00:47:54
using across a whole bunch of their different websites which
00:47:57
of course mean that a whole bunch of different patients were
00:48:00
impacted by them had accessibility issues.
00:48:03
So what's great is that kind of stuff basically cascades across
00:48:08
a whole bunch of different touch points.
00:48:09
Even sort of more interesting from that as part of it, we did
00:48:15
an audit of the brand guidelines and actually identified that
00:48:19
there were a whole bunch of accessibility issues literally
00:48:21
directly within the brand guidelines themselves, and so
00:48:25
because of that, you know you think about where a brand book,
00:48:28
for example, cascades to a whole bunch of different touch points
00:48:32
and agencies.
00:48:33
You know, there again, by being able to correct that and being
00:48:36
able to push that out to all the different partners who are
00:48:39
using it, it very quickly sort of gets to the root cause of
00:48:44
some of these design challenges that are likely to occur.
00:48:46
So you know, in accessibility I like to say silence is the best
00:48:51
outcome if that makes sense, because nobody is upset, nobody
00:48:55
is complaining and nobody's raising issues.
00:48:58
And so since doing that and adjusting some of these touch
00:49:02
points and there have been dozens of corrections now as a
00:49:06
result of sort of going through this process we've definitely
00:49:10
seen sort of a really significant drop in the number
00:49:15
of people who have been using, in particular, the call center
00:49:18
as a key point of contact.
00:49:19
Interesting, Interesting.
00:49:23
Speaker 2: I hate to do this because any move to wrap up the
00:49:27
conversation is going to feel like a cold cut because I still
00:49:29
have like 100 questions but we only have so much time For folks
00:49:33
that want to keep this conversation going.
00:49:37
But replace me and talk to you directly.
00:49:40
How do people find you?
00:49:42
How can they reach out?
00:49:43
Speaker 1: Absolutely.
00:49:44
So you can definitely get a hold of me over LinkedIn.
00:49:47
It's Patrick Glinsky.
00:49:49
I post a lot about different topics related to startups,
00:49:53
entrepreneurship and accessibility, and, of course,
00:49:56
you can get me at Patrick at normativecom.
00:49:59
This is one of my favorite topics to talk about and I
00:50:05
believe so much in the sort of patient-centric movement that
00:50:09
has been happening over sort of the last several decades.
00:50:12
So if you're interested in accessibility or about how to
00:50:17
sort of bring people living with chronic diseases closer into
00:50:20
your processes, please reach out .
00:50:22
We're going to have a great conversation, at the very least.
00:50:24
Speaker 2: That passion has come across loud and clear in this
00:50:26
conversation.
00:50:27
I appreciate it.
00:50:28
I'm sorry that we had to bring it to a close.
00:50:31
I've really enjoyed the conversation.
00:50:33
Thanks so much, Patrick.
00:50:34
Speaker 1: Awesome.
00:50:35
Thanks, Neil.