Agile Marketing with Lesli Proffitt Nordström of the National Organization for Rare Disorders (NORD)

In today’s rapidly-changing marketing landscape, agile methodologies are increasingly being adopted by marketing teams. In this episode, Lesli Proffitt Nordström of the National Organization for Rare Disorders (NORD) discusses how she uses agile marketing to boost the productivity of her team by over 200%.

Full Transcript

Welcome to Health Nonprofit Digital Marketing, a podcast for nonprofit marketing and communications leaders who are using the Internet to reach and engage people with health issues. I’m your host, Spencer Brooks of Brooks Digital, and today I’m joined by Lesli Proffitt Nordstrom. Lesli is the Director of Marketing and Communications at NORD, the National Organization for Rare Disorders. So Lesli, first of all, thanks so much for being on the show today. Could you start by giving listeners a brief review of who you are and what you do?

Yeah. Spencer, thank you so much for having me. I’m really thrilled to be here and to be able to share this platform to not only talk about marketing and sort of my perspective on it and who I am and what my mindset is, but also the National Organization for Rare Disorders. We serve over 25 million Americans impacted by rare diseases. What is a rare disease? It’s any disease that affects fewer than 200,000 individuals. There are approximately over 7,000 rare diseases, many of them affecting children, but also many affecting adults like my own husband. And so for me, rare diseases and the fight against them is not only personal, but it’s something that is a critical health challenge to us all as Americans and as global citizens.

One of the things actually really appreciated about your work, and I don’t know if I actually shared this with you before when we are talking, but my brother is affected by a rare disorder as well. He has something called PMD which is like one in 100,000. And so when I was first looking at NORD, I saw that right on the site as one of the rare disorders. And it kind of struck a special tone with me because I know intimately what it’s like to be a family member of someone who has a rare disorder and it took a lifetime in almost 30 years to come to that diagnosis.

So I really appreciate the work that you’re doing. One of the things that I wanted to dig into a little bit is we were talking about this idea of this project management system called scrum that you use at NORD, and I thought it was so fascinating. So you’re a certified scrum master. Could you explain to listeners what in the world is scrum and why should they care?

I would say scrum is not something that you hear a lot about in the nonprofit marketing space. It’s not something that came from the marketing world, and it’s not something that came from the nonprofit world. So what scrum really is, it’s a framework for how you approach work. And it’s underneath this broader umbrella of agile methodologies. So it’s like kissing cousins with kanban and scrumban, you might hear six sigma. These are a lot of things that are thrown on the business world. And so I started reading about agile and scrum before I came to NORD and I got really interested in what that mindset was and how it could actually affect marketing. I’m not creating products like a car or toothpaste.

So what does that mean? So what scrum is is a framework, It’s really, it’s emphasizing teamwork, accountability and the most important word is iterative, progress. Iterative meaning it takes a couple of drafts just like we’re growing up when you’re writing papers, your first draft isn’t going to be your best. You know, you’ve got to, you got to iterate, you’ve got to keep going back to it to get to exactly what you need to get that a plus. And so again, part of scrum is also transparency inspection and adaption.

So meaning that you work in a, in a way that invites transparency, invites trust you look at the work, so you don’t just create the work and move on. You look at, how did it, how did it function? How did, how are people receiving it? And then you take those learnings back and you adapt. Again, iterative lee the next version of it. So that lands better with whoever your customer is or whoever your stakeholder is. It’s what’s really unique about it and why I think actually that mindset is really valuable to nonprofits.

It’s all about the customer and I know we don’t use the word customer and nonprofits, that’s very taboo. Um, so we can use the word stakeholder instead or audience, but it really becomes all about them. And I think it’s nonprofits. That actually makes a lot of sense because our stakeholders, the folks that we are driven by our missions for absolutely are in the center of our mission of our mind and of our work. And so why not use an agile methodology that continuously reinforces that? So one of the questions that I have for you is I think that’s how I see a lot of nonprofits approach marketing or really technology projects is from this place of funding constraints. Right?

So you have a limited budget and it’s usually like it’s a capital campaign, it’s a grant, you’ve got this money and it’s a one time use. And so that leads to a big honking project. That is a one and done. Right. So do you have any advice for listeners who might think, OK, well, iterative. That sounds interesting. But how do I manage that practically when my funding comes in these big, these big chunks? I think that it’s really it’s about do you have to have a big honking project?

What is the problem that you’re trying to solve? Because if you’re if you’re not thinking in those terms, if you’re not thinking of like my customer, my stakeholder has a problem, and this is my proposed solution to them, you don’t have to be a for profit marketer to think in this way, then you’re gonna back into what solution you need to develop because no one knows it better than your customer. No one knows better what they need, uh than your intended audience or your intended target. And so listening to them, talking to them, and then I think backing into something that we often use the word minimal viable product.

So what is something that you could put out in the world that would be of value, that would be utilized, that you could get information on how people used it liked, it didn’t like it. And then again, build a second version, build a 3.0 a 4.0 and so really going in with the mindset that even when you’ve got these big honking capital grants that I am building something that is foundational, that’s a strong and clear foundation, but that is built to change. It’s built to evolve and to grow because our community’s needs change all the time.

No more. Have we seen that than in this past year with the pandemic And so we need to be able to be flexible in all that we create otherwise. We built something, it gets outdated and we have to throw it all out and start all over again. And that’s a lot of wasted effort. It does make sense. And I think the flexibility. That’s an interesting point I want to come back to. But actually, I did want to ask you about this. The customer-first mindset. I know we don’t like to use the word customer, but it seems as if from my perspective, sometimes that gets lost in the nonprofit world.

There’s usually people on the board or in senior leadership positions or just staff members and they all have their perspectives or opinions or things that they think that the organization should be doing. But could you talk a little bit more about what it means to have? Keep the audience first, the customer first and focus on that. Yeah, absolutely. I say often our stakeholders keep me honest because I fall in love with my own ideas or I started, you know, hearing different conversations and think, I know which way is the best way forward.

What thinking in terms of a customer-first mindset does is it allows me to do social listening. Look at the data just because we believe something to be the case. Often when we look at are people really using that web page, the way we think it is, we think it’s so fantastic is the traffic proving that point? Are people bouncing off that page really quickly? And so I think checking your own preconceived notions at the door and really looking at what the marketplace can tell you.

And even in the nonprofit world, it can be a lot I know for our community, social media is such a critical touch point, especially now in the pandemic where we can’t physically come together. You can learn a lot by social listening, you can learn a lot by putting things out there and seeing what does get the clicks and what doesn’t. And you can also do surveys or even it can be more laid back than that. It can be talking to patients. You know, I’ve had the pleasure of getting to develop a lot of wonderful friendships with a lot of folks in our community, both leaders and advocates and you know, all stages in between.

And you know, sometimes it’s as simple as saying, what did you think about and getting that qualitative feedback as well as that quantitative feedback. And then finding a way to make your case with that. Because it’s gonna be hard when the board thinks one way and you’re seeing the community be a different way. You know, as much as I’d like to think that people view marketers is the all knowing Wizard of Oz, that’s not the case. You have to build it. You have to use your quantitative data, you have to use your qualitative data your you know, the emails you get from folks that say, I really appreciated this because it did this for me and you have to mash those things together and just like we build a case again and again for organizations for our mission.

We have to build a case for our audience, sometimes to our board. There’s two things that popped into my mind as you’re talking about that. One of the things is that the idea that you mentioned about putting aside your assumptions. And I think it’s funny because actually I really agree with you on this approach. And I think that a lot of times, at least I see this from my perspective is that there’s big bets that are placed on assumptions. If you’re talking about a big project that’s based a lot on internal assumptions, that’s a big risk.

And so that’s where I really see such a refreshing change of pace in the agile world is saying we are going to go and actually talk to our constituents, talk to our audience and make educated decisions based on what they say and not spend all of our budget upfront on our assumption. So I like that. Could you talk a little bit more about using, you mentioned like social listening for example and using data and feedback to combat internal perceptions or opinions like what value and how would you recommend people go about using their learnings and that both kinds of data to combat someone’s opinion usually on the board or some really senior position?

I think the important thing is always to start from a place that you’re not looking to invalidate someone’s opinion. You’re looking to see what evidence is out there. You know, it’s you’re getting to be a C. S. I. Agent for an hour or so and so you’re looking at whatever the original concern is, how that’s what the conversation is about that on social, not just on your own pages. You know, thanks to hashtags and looking at your competitor organizations or your partner organizations, how are they handling the conversation?

And what sort of uh you know, are they, are they getting into sticky situations or are they getting a lot of kudos for being first out um in talking about a difficult issue and making sure that you bring all of that back to the board without a lot of I try not to have a lot of um of my own opinion layered over it. It’s sort of just the facts and nothing but the facts and then come back to sort of, and these are some ways we can go, we can either, you know, if we believe this to be true, we can go down path A and if we don’t believe this to be true, we can go down path B and we can talk about the pros and the cons of both things.

I think it’s really important that I know, and this kind of comes back to scrum. I am a subject matter expert in one certain area, but we all bring our own subject matter expertise to every project. And it doesn’t matter if you’re, you know, the chairman of the board or you’re at the coordinator level or any level in between. You bring a certain uh kind of expertise or kind of focus to any conversation and so being open to what others have to say, but hopefully coming to a place where there is a clear decision made in a concise period of time, that’s something I haven’t really elaborated on with Graham.

Um but one of the things that is great about it is it’s taught me to time box some of my discussions or some of my considerations that the importance of scrum is in fact to act because only an acting and getting something out there, can we get the real feedback we need that will inform that next iteration. It doesn’t mean you rush something out the door and see what sticks. It’s very deliberate, it’s very considerate, but it does mean that you have to put something out there.

Um, otherwise that’s back to waterfall, that’s the old way of doing things, building a big honking project and getting six months into something and realizing that the community is shifted. That’s not their concern anymore. They don’t need, you know, an in person event. Now they need PPE, you know, and so suddenly all your big honking work, it goes out the window or gets put on pause. And so I think my goal is less pauses on projects and more projects getting out there in real time so that they get where they need to go when they need to be there.

Makes sense. Yeah. And I do want to touch on the covid thing. I actually would like first though for you to dig into a little bit this idea of time boxing and using that as a driver of action. I think that’s fascinating because in my experience, there’s sometimes a lot of bureaucracy that in committee based decision making and lots of the stuff that’s happening in organizations. So could you tell us a little bit about how you are maybe using time boxing at NORD and how that can be beneficial?

Yes, I think analysis paralysis is something that we all suffer from, especially in the nonprofit space where sometimes we do have the benefit of having time to be more considerate and more deliberate with our actions as opposed to in the for profit world where time is money and you’ve got to go now now now. Um, but it can it can be a hindrance as well. And so, you know, one of the things that we do and on my team when we’re thinking about our priorities are marketing priorities is we’re signing them a value.

Maybe it’s 12 and three with one being the highest priority to being medium and three being low. But it’s more complex than that because also we can give them a sub value may be small, medium and large. Small, meaning it’s easy to do medium. It’s sort of easy to do in large. This is going to be trouble. And so understanding with the time box, if I’m blocking time on my calendar, I try to be realistic and set this is what I can do in this time. And so that I’m maximizing my own efficiency by not jumping from task to task, but trying to build a chain of related tasks so that it flows, it creates that flow that every person wants in their work um that we all seek to have.

And so sometimes even doing something low priority, but it’s easy. That’s great. You do it in your time box, you get rid of it. So it’s out, it’s out of your mind, you’re freeing up that brain space for other things. Um And so it’s uh it’s something that my team in particular really champions. And as soon as we meet resistance because there’s always that emergency, you know, I need, this is breaking and this is now and often it’s my job is the scrum master to come in and say, why is it an emergency?

What is this impacting? And it’s not to say not to slow things down, but just again, to be more deliberate and what we do more considerate and what we do, um not only of our audience of our customers, but also of our team of our people because we are also a finite resource and we need to take care of our people if we’re going to continue to have like really high productivity rates. I mean I um I just want to brag on my team, you know, in during the pandemic year, when we were all working remotely.

Not only do we make a seamless transition to that, um but we saw the amount of requests we were able to deliver on, grow by over 200%. You don’t get that productivity increase or that efficiency increase without creating some way to manage the noise and time boxing is one of many tools that scrum has that can help you with that. And I think something is, well, I don’t know if you use this exact length for cycles, but I know it’s really typical and scrum to plan your work two weeks at a time, right?

And I think the unsaid thing about that, because I know we’re both familiar enough with scrum, that’s almost a given, But the idea that if you have a person and you’re planning two weeks worth of work for them and you know that they have 40 hours are really they have like maybe 25 or 30 once you take out all the meetings and email and all the other stuff. Right? Uh they have, you know, like 25 hours a week and so you say, okay, well, I’ve got to like, if they have more than 50 hours or something of work in this next two weeks, there’s going to be a problem and looking realistically at that, like, um, I don’t know, do you, do you use certain lengths or planning?

Do use like two weeks or are you more fluid? How do you manage that? We’re definitely on the fluid side. So you’re absolutely right that a sprint is usually about two weeks. They can be as long as a month. Um I think that that is amazing and I aspire to move our work in that direction, but we are one team that is operating in a more scrum like fashion and there’s lots of other teams that we constantly collaborate with. It don’t necessarily share that mindset. So, you know, it’s a process I presented to my management team about scrum and agile, we use a lot of the word and the lingo and the jargon to try to make it more comfortable and more familiar and I think that we, what we do have is we take sort of the ideas of scrum, we take the ideas of um planning our work, planning our blocks, uh and we bring that internally to the team.

So definitely I can look um in our ticket system, we use something called Reich and I can see the work that’s coming for the next couple of weeks. We ask people to put in their request two weeks in advance so that we can work that into that two week cycle. Um but we’re definitely much more flexible about that because we know that any system is difficult to bring in and do it in a pure way and maybe one day I will get there. But for now I’m really seeing a lot of improvement and a lot of uh efficiency just in bringing these small ideas to bear in our day to day work.

Well, I love that. And I think that you’ve captured some of the core values and at least in my opinion of agile, that philosophy where your capacity planning and time boxing and being really realistic about scheduling and priorities and, you know, there’s a lot of stuff in the actual world, a lot of ceremony and a lot of things that might add some value for some people. But I think it’s great that you found something that works and you’ve been able to adapt that for your organization. I wanted to come back to the, to your Covid response and ask you how you leverage this idea of scrum of agile.

When Covid hit. No, I think that it was one of the times for I really saw our organization acting in a way that was most aligned with an agile mind set and I’m so incredibly proud of that work the organization to ignored. So when the pandemic head obviously, you know, a lot of, there’s a lot of unknowns, um, we’re all suddenly working remotely and so we’re having to connect via technology and we know as communicators, that connecting over technology is more difficult. It’s easier to come to decisions when you were face to face physically in the same space.

But we started convening are different leaders from different groups that were bringing those different, you know, subject matter expertise, um areas to bear. And we started thinking about what is our community need. Um and one of the best things that I think we did coming out of that was we actually did a survey to the community. So rather than say, oh, I can do this and I can do that. We actually, at the same time we were working and thinking about what do we need to plan, What information do we need to get in front of people.

We were asking community, how are you, how is this impacting you? Um from a very day to day as well as a high level sort of what do you need that we can provide. Um and so we did this survey and based on those results, we were able to realize that one of our major policy focus is for this pandemic era, should be on telehealth and lobbying governors to be able to signed legislation to allow doctors to see patients outside of their state. Since, you know, states license medical professionals.

We looked at the misinformation that was spreading and we saw that reflected in the survey. And so this idea of having video vignettes that we would do with medical experts to be able to put on social media. So you could have a one-minute video about, you know, what is misc affecting Children? You know, what is um, I have a compromised relative in my, in my household. Can I go to work, you know, being able to answer these questions to the best of our knowledge and with people who had the right know-how and capabilities to address that.

That was really critical. And then we built on it with Capacity uh, programs for our membership. We are an umbrella organization with over 300 members. These are non profits that are having difficulty in this area. Their goals have been cancelled, their summits have been cancelled. So how can we support them either through seek grant opportunities or through giving the best practices of how you take your fundraiser and you turn it into something virtual based on learnings that we had. You know, it was so multi pronged and it was really a lot of solutions coming together, built for the customers and then we would get feedback from them, we would get survey data.

How did this do did you like this resource? We would get the data from social, we pulled that back together and it would reform the second round of webinars and video vignettes. And it was just a really beautiful thing to see. And you know, even we’re still employing it. We’re still adding new resources or, or you know, we did a webinar with the C. D. C. And the FDA in January talking about the vaccine. We know it’s not done yet, but it was just really beautiful experience where the conversation, the customers were really reflected in what we did.

And I think that’s why there was so successful. I’m a huge fan of that methodology as a whole. And I think it’s so interesting how it seems like from your perspective that some ideas came to you and your organization that you wouldn’t have just been able to come up with on your own because you didn’t have the inside or you know that your audience supplied you with us. So I think that’s so great. I wanted to ask you two more questions here before we wrap up, kind of moving out of the scrum idea.

So the first is what’s one thing in marketing you’re working on right now, that’s consuming a lot of brain space for you and what takeaways can you share with listeners who might encounter that same challenge? I think a lot of people that are leaders and their organizations at this time are hopefully thinking a lot about one particular issue and that’s their human capital, their team, their people, you know, we’ve been in this pandemic for one year and one of the things that I think about um a lot after hours, I’m reading a lot of articles, if it’s psychology articles or you know, think pieces and fast company or the new york times about what, what is the temperature of our workforce, how are people feeling and what can I do to ensure that my team continues to bring their best selves to work, that they feel supportive, that they feel valued and that they feel, you know, I know they feel connected to our mission, that’s something that at north were so it’s so amazing to have a powerful mission that impacts so many of us personally.

So that is a wonderful driving force, but that can’t always sustain you, you know, we are humans and so how do I take care of them as a leader? How do I continue to grow them and not just say, you know, productivity, efficiency, push, push push, but that we are all growing and our expertise together and that we are a unified cohesive team. It’s like the whole idea behind not to make it back to scrum, but um one of the early things that inspire scrum was this Professor was watching these robots with multiple legs and each leg on this robot had a different brain or chip and watching them have to learn to work together to run, and at first it didn’t know how to communicate with the other legs, but over time, through machine learning it would learn to run.

And isn’t that really symbolic of a team. We all have our own brains, we all think differently, we all want to go in different directions. So how do we work together to move faster in a forward direction and so to pull that back together. So for me it’s just how do I take care of my team? How do I take care of my community? How do I keep this progress in this momentum going? Yeah, thank you for sharing that. That’s a good timely reminder. I think for a lot of folks listening last question I wanted to ask you here are what two or three resources would you recommend the listeners who want to keep up on news and trends and nonprofit marketing?

Yeah, absolutely. I mostly follow my, my space, rare disease and health care space. So I do a lot of reading if it’s healthcare dive or marketing dive. These are digests you can sign up for and they have a lot of great insight that’s easy for a busy marketer to keep in touch with what changes are happening. I also read Ad week. I think that there’s a lot of good things that you can sometimes look, I don’t have the budget of a Nike, but I can see what they’re going through and maybe there are lessons to be called from that and also a girl can dream.

And then I, you know, look at folks that inspire me in the marketing world, if it’s someone like a Seth Godin or a Neil Patel or you know, um, an Hadley just following these folks on LinkedIn, taking time when I see that they’re speaking in an event, especially if it’s free, to look at that, checking out their books from the library. I’m a big reader, so I just try to consume as much as possible and hopefully something will eventually stick. Love it. Love it. And as we wrap up here, how can listeners get in touch with you if they’d like to learn more about your work?

Absolutely. I invite anyone to connect with me on LinkedIn. Um, just look for Lesli Nordstrom. Some people say my name is Nord Storm and that is a great name, but that is not my name unfortunately. So please connect with me there. You can also get in touch with me right now at the national organization for rare disorders and there I’m lnordstrom@rarediseases.org.

Awesome. Well, that does wrap up our show today. Thanks again for sharing your wisdom Lesli.

No, this was fun. I mean, I always like to nerd out about marketing and about health care. And so any time, it doesn’t even have to be recorded Spencer, you can just call me up and we can well, time-box it, we’ll pick one issue and we’ll dive really deep on it.

That’s right. I love it. We’ll have to do it. And yeah, I really enjoyed the conversation that you had to do the wisdom that you brought to the issue of scrum. I hope everyone listening as well took away some nuggets from that perspective. So again, thanks for your time, Lesli and looking forward to keeping in touch.

Thank you Spencer.

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