The Secret of Highly Effective Health Nonprofit Websites

A few years ago, my brother was diagnosed with Pelizaeus–Merzbacher disease (PMD)—a rare, incurable form of progressive leukodystrophy that left him unable to walk without help for the rest of his life.

Despite what you might imagine, as a family, this diagnosis evoked more relief than surprise. By this point, it was long-established my brother’s health was declining.

He had grown more and more fatigued to the point of relying on a wheelchair for transportation. In the span of a few short years, he went from a homeowner with full-time employment to moving back in with my parents, unable to muster the physical strength to meet the demands of part-time work.

During this process, the emotional toll on my family was immense. After seeing specialist after specialist, my brother finally went to the Mayo Clinic itself—only to leave with few answers and a lot more questions. By the time he received a diagnosis years later, it was a huge relief to simply arrive at an answer.

One of the most personal, emotional moments I had with my brother’s journey is when I began reading about the disease on the PMD Foundation’s website shortly after his diagnosis.

PMD is a genetic disease with a 50% chance of passing from mother to child. While sons born with PMD experience symptoms, daughters usually function as asymptomatic carriers. This explains how the disease laid dormant in my family for generations without rearing its head.

As I read this, it became clear that both my brother and I (the two sons in the family) had an equal chance at either having PMD or living a normal, unaffected life.

And then it hit me like a ton of bricks: I won the coin flip at birth, and my brother lost.

How highly effective organizations leverage the patient journey

I have since worked through my guilt, but I share my brother’s story to highlight that the patient journey is often emotional and messy.

It’s one of the reasons I chose to direct the work of my firm, Brooks Digital, to focus on empowering nonprofit health organizations to build a digital presence that improves the lives of patients.

I have shared in the past that’s it’s the job of a health nonprofit’s digital presence to change the narrative of a patient and their family. But that only can happen when, as an organization, you understand how you fit into their story and orient your digital presence around it.

I want you to imagine, for a moment, you have a detailed, researched roadmap of a patient’s journey as applied to your organization. It outlines in clear detail:

  • How a patient is feeling on each stage of their journey

  • The unique challenges and pain points they experience

  • How they are searching or engaging with online information as they move between stages

  • How related audiences (e.g. caretakers or healthcare providers) support them at each point

How would this knowledge change your overarching digital strategy? The content you write for your site? Your social media posts? The tone of voice you use? How you fundraise?

This is the secret of a highly effective website for a health organization: hidden underneath the layers of trendy design and powerful technology is the backbone of the patient journey.

Let’s talk about why this is so effective when it comes to your digital presence—and why most organizations miss it altogether.

The growing body of research supporting patient journey maps

The concept of the patient journey and the patient journey map is not new. You may be aware of its existence in the healthcare space already.

The idea of mapping the patient journey springs from a growing body of research that the patient experience with the healthcare system is, well, pretty bad.

Prophet and GE Healthcare Camden Group performed a study that found 81% of consumers are unsatisfied with their healthcare experience (and the happiest consumers are those who interact with the system the least).

What’s even more interesting is, according to findings, 75% of frequent healthcare consumers feel frustrated (compared to “just” 48% of all healthcare consumers).



This matters because, as a nonprofit health organization, your constituents will typically be in the category of frequent healthcare consumers.

Whether your organization falls on the side of support (e.g. for chronic disease, mental health/addiction, cancer, etc) or provider (e.g. hospice, clinic), it is a reasonable bet that your constituents will be more frustrated on average with the healthcare experience. And you get lumped into that frustration.

This matters because you must recognize and acknowledge the digital table stakes are higher for you.

Providing an average website to a frustrated person is not the same as providing an average website to an indifferent person. You have to work harder to provide a truly great experience to counteract the negative experiences a visitor may have had before encountering your organization.

Now, some of you know your organization is different. You are not cold and clinical—you are the antidote to that experience. And honestly, I believe you. But consider this for a moment:

In the study above, providers overestimated the quality of their patient experience by over 20 percentage points. In other words, 63% of providers felt they delivered a great experience, but only 40% of consumers reported actually having a great experience.

Even if you aren’t a provider, is it possible you overestimate how well your organization is delivering on your digital experience?

Because if you can’t confidently answer that question, you may be falling short in areas you don’t realize.

Journey maps start with audience research

The biggest mistake most health organizations make with their digital presence is not validating their audience in enough detail.

That’s not to say you don’t have an understanding of your audience, but there’s a good chance it’s skewed or incomplete.

I have written before about the flawed survey techniques that insert bias into your view of your audience. Other times I find anecdotal experience from leadership and program staff—which is valuable, by the way, but still anecdotal—is the strongest informer.

When assumptions about your audience are never researched and validated against your actual audience, you run the risk of basing your entire digital strategy off of faulty assumptions. It’s a risky move.

This is why most health nonprofits don’t have a website supported by the backbone of the patient journey. They jump straight into the details of building the website (the design, features, navigation, etc) with assumptions about their audience that have never been validated with research and data.

Of course, no research is perfect, but basing decisions off disciplined research is more reliable than operating on assumptions.

Beyond verifying assumptions, research highlights gaps in your audience where you are falling short.

For example, you may discover you attract a younger audience, or skew towards healthcare providers, or attract recently-diagnosed patients but not ones later on their journey. This information provides clues about what you need to change in your website content, programs, or even staffing to serve a more representative slice of your audience.

Audience research and validation can take many forms, but it’s helpful to gather it from more than one source, such as:

  • Surveys and interviews

  • Third-party data

  • Analytics from Google and social media platforms

Good research involves both your current audience as well as your total audience. It examines the people who currently visit your website, social media, email, etc, and compares that to your total potential audience.

So if you run a treatment center for people dealing with alcoholism, it’s important to research your site visitors and patients, as well as the broader demographic and psychographic data on alcoholics. That will highlight gaps and opportunities for you to pursue.

Audience research gets condensed into personas

Your understanding of your audience is only helpful if you put it to use. And if you’re like most nonprofits, the capacity of your people (and you as a leader) is a significant challenge.

It doesn’t matter if you have detailed audience research if it’s sitting in a dusty tome on your desk. And unfortunately, this is what I see with some well-intentioned organizations that invest in audience research but don’t put it to use.

The ultimate goal of audience research is to inform your digital strategy and get your organization on the same page about who you serve. And because, as you know, turnover is a significant issue in the nonprofit sector, it’s not enough to use your research to set a strategy and then leave it. You need to impart that knowledge to your people continuously as they enter your organization.

Imparting a clear, researched, and validated view of your audience to your staff is an overlooked capacity-building opportunity.

In lean management theory, one of the principles is to push decision-making down the organization to the people closest to the details. The theory is that the people who are closest to the action have the most context, and can make quicker, more informed decisions instead of waiting for a senior leader.

If your people have a clear understanding of your audience (context), coupled with a shared understanding of your strategy (direction), they will be able to make intelligent decisions on their own without needing to consult you as much.

Context + Direction = Capacity.

But without both inputs in the equation, your staff will need leaders to do most of the heavy lifting for them. It’s just slower.

But we’re here to talk about personas. A persona condenses that tome of audience research into key segments containing important details that can be quickly absorbed and referenced during your day-to-day work. It can be distributed during onboarding and discussed during meetings.

Personas have some kind of name like “Stupendous Spencer” (what a great name for a persona, right?) which you use to refer to that audience segment during conversations.

And you don’t need a lot of personas, either. One of the early mistakes I made was having clients build lightweight personas for dozens of potential audience segments. In reality, what they needed was 2-4 major segments of their audience research in deeper detail.

In short, personas help take all that data and research and build it into the collective knowledge of your organization in a way that’s less overwhelming.

Personas go on journeys

Personas are great by themselves, but what gives them depth, texture, and power is their journey. The journey is what makes things click.

Without the journey, you are communicating with a static individual. But the truth is, that same individual may engage with your organization at different points in their story with different needs, emotions, and desires.

The journey gives you a set of lenses through which you can craft your digital presence to meet them at each of those pre-planned points.

Journey maps have stages. In the healthcare world, a journey map for a patient looks like:

  1. Awareness: self-assessment of symptoms, online research, outreach to friends or social media

  2. Help: initial contact with the health system or provider

  3. Care: assessment at a medical facility

  4. Treatment: on-site and follow-up care (medication, counseling/therapy, suggested lifestyle changes)

  5. Lifestyle Change: adjustments to daily routines and habits to promote long-term wellbeing

  6. Ongoing Care: managing care between visits to a medical facility and proactive health maintenance

There are, of course, journey maps for other audience segments beyond patients. Depending on your organization’s specialty, you may not even be targeting patients (e.g. if you focus on research, etc). But the fundamental benefits of journey mapping still remain regardless of your audience.

Your journey maps will be unique to your organization and your audience—the more specific, the better. Each stage of the journey reveals potential touchpoints with your organization: when and how that person is searching, what programs are appropriate for them at each stages of the journey, and when it may be appropriate to make a fundraising or advocacy ask.

Journey maps also pinpoint emotions a person is experiencing at specific points in their journey, and how other audience segments such as healthcare providers or family members support each stage.

This is what I mean when I say journey maps give personas depth, texture, and power. They generate a rich canvas giving you insight into that person at specific points in time, and give you the insights to meet them there.

Journey maps allow for personalization

Personalization is one of the buzzwords of the day. I get it. Consumers have high expectations for their digital experiences, and they don’t want to work hard to find the information and resources they need. Your organization, of course, is no exception to that rule.

But the vast majority of non-enterprise organizations don’t need personalization as it’s usually discussed.

You know, all the opaque AI algorithms and tech wizardry that’s supposed to dynamically reorganize your site content and messaging based on data about each unique visitor. It’s cool and trendy, and the big players are doing it, but you don’t need it for a highly effective website.

(By the way, that’s not to say there isn’t a place for dynamic or contextual content on your website, such as related/recommended resources or customizing parts of your site based on information from your CRM or logged-in users. I’m talking about those enterprise-grade personalization engines that come paired with enterprise-grade price tags.)

All you need to get started is your audience research in the form of personas and journey maps.

Personalization, in this case, takes the form of considering the different personas you have developed and their stages of the journey and crafting the information architecture of your website to address each one. It’s about making your website easier to navigate and use by reorganizing it around the key touchpoints you discovered in your research.

Once your site is organized around personas and their journeys, it can make sense to enhance your personalization to an individual level by using the behavior of specific users to determine which persona they belong to and where they are on their journey.

But way more often, I find organizations think they need individual personalization when they’ve failed to address the more fundamental issue: a lack of detailed understanding of their audience and their journey.

How are you supposed to know how to personalize on an individual level when you can’t personalize for broad segments of your audience first?

The patient journey has broader implications than just your website

Your website doesn’t exist in a vacuum. It’s part of a larger ecosystem—not just the digital ecosystem, but the ecosystem of your organization, too.

Audience research, personas, and journey maps enhance the effectiveness of your website, but the information has farther-reaching implications. For example:

  1. Email: you realize you need to stop sending the same newsletter to your entire list and start segmenting and getting smarter about what content you send to each persona. You also decide to pursue some form of marketing automation to do the heavy lifting of engaging your audience segments via email automatically to reduce the burden on your staff.

  2. Social: you start to change your messaging, hashtags, or types of content you share to speak more directly to individual personas and stages of their journey. You also realize your audience is concentrated on a particular platform and invest more time and resources there.

  3. Fundraising: you have more context on when and how to frame your ask for individual online giving. For major gifts and grants, you have more compelling audience information to craft a strong appeal tailored to the funder’s priorities.

  4. Advocacy: you realize certain stages of the journey are closely tied to advocacy goals, and intelligently include calls to action on specific pages, emails, or posts. Or you get really smart and use behavioral data to detect when someone in your database reaches an advocacy-ready stage of their journey, and send them an automated series of emails to “flip” them.

  5. Programs: you now understand you are missing education around certain topics and lack follow-up support to patients, so you restructure and improve your programs to better serve your audience. You also identify the best channels to connect people with your programs given the stage of the journey they’re on.

  6. Staffing: all the above insights make you realize you need to realign the roles of your staff to take advantage of the new opportunities (while downshifting on something else). New staff members are more effective sooner in your organization because they can use your personas and journey maps to quickly understand how your organization fits into the bigger picture of the patient journey.

If that seems both exciting and overwhelming at the same time, remember you can take things one step at a time. If you’re like most organizations, you are overburdened and under-resourced, and probably need to be doing less, not more.

By starting with a validated view of your audience, you have the confidence to make the priority calls on what stays and what goes—what’s worth your time and what isn’t.

If this idea of journey maps seems too good to be true, remember there’s nothing special about them per se. Research, personas, and journey maps are only artifacts that provide you with clarity. Clarity is the special sauce here.

And clarity, I would venture to say, is the real secret of a highly effective health nonprofit website.

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