What must nonprofits learn from brands like Reebok, Wayfair, Peloton, Marriott and the Boston Red Sox? Pretty much everything there is to know about how to engage directly with patients.

For decades, nonprofits have relied solely on providers, particularly large academic medical centers, to sign patients up to data registries. It’s not a bad approach – actually, we can’t do it without these partners. Not only do they have face-to-face access to potential donors, but patients trust them, and their medical expertise boosts the credibility of the data donation process.

But this approach alone simply isn’t working fast enough to gather the copious amounts of diverse and shareable data medical research organizations desperately need to find better, more precise treatments and cures. To get that kind of data, we need to go directly to the patients themselves as well.

Recently, the Harvard Business School Kraft Precision Medical Accelerator gathered 11 direct-to-consumer marketing experts and 16 leaders from advocacy and research companies/organizations to discuss the question: how do we directly (and meaningfully) connect with “healthcare consumers” to boost data registry acquisition, engagement and retention?

Here’s just a little taste of that conversation (more insights here). As you’ll see, these consumer marketing pros are definitely on to something:

  1. Use every channel you can: The consumer experts in the room were adamant that you need both an offline and online strategy to recruit and engage with participants. Indeed, most modern brands use a combination of digital platforms (websites, social media, etc.) and physical locations (showrooms, pop-ups, etc.) to show off their products/services to new potential users and stay in constant contact with current users. We can mimic these efforts by using similar tools to engage with patients online while simultaneously amping up in-person recruitment via doctors and treatment centers
  2. Envision the complete user experience: The hard truth is, if any aspect of the data donation process feels tedious, arduous or confusing, patients will just give up. This is especially true for the consent portion of a data registry sign-up — you need to be crystal clear and transparent or risk spurring distrust or anxiety. To better understand what your user might experience, the experts suggest you ask yourself: Was the enrollment process easy and frictionless? Was their interaction with a customer service rep or assistant pleasant and helpful? Was the phlebotomist who came to their home to collect biospecimens polite and professional? Perhaps most importantly, did you thank them and explain why their contribution matters?
  3. Get into the weeds with your target audience: Chances are, if you’re managing the brand (or in our case, the registry), you’re too close to it to be objective. In order to effectively design and improve a data registry, you need to really understand your target audience: what are their fears, emotions, potential motivations for participation, barriers to participation? You have to get in the weeds with your ideal user and observe every aspect of their donation experience – and, if possible, their daily life — because you never know what seemingly unrelated activity or pain point could influence whether someone decides to donate (or keep donating) their data/tissue samples. How do they go about opening the registry enrollment kit? What unexpected questions do they ask their phlebotomist? Do family members tend to observe the donation process? These are the types of questions you can only answer through good consumer research.
  4. Lastly… it’s all about timing: With something as delicate as disease, you have to be tactful and considerate with how and when you approach potential participants. Think about it – very often, people are approached to donate data/samples after they’ve just been told about a grim diagnosis or when they’ve just experienced a relapse. Emotions and stress are running high, but so is the sense of urgency. You have to approach patients (and their families) while that urgency to find a cure/better treatment is still immediate, but not so soon after diagnosis that they’re too overwhelmed to think critically about the donation process and its potential impact.
  5. Of course, none of these tactics will be effective if you don’t actually provide value to your participants. After all, they need a real reason to donate. In my experience, there are three central reasons why someone chooses to donate: one, to optimize their own treatment by learning from previous patients’ experiences; two, to altruistically find better treatments for all; and three, to feel part of a community.  Naturally, many people are fueled by all three. The key is to clearly communicate all of the “wins” to patients.

Still not sure where to get started on this list? Let me throw one more idea at you: hire Direct to Consumer experts.