Rethinking Patient Communities: Beyond Engagement Metrics to Meaningful Connections

By: Joan Kincaid April 14, 2025

As I introduce BOOMITY|Health at the World Orphan Drug Congress for the first time since our January 2025 launch, I find myself reflecting on a question that deserves more candid conversation in our industry: How do we create value in health communities without getting caught up in unrealistic engagement expectations?

There's a reality we all recognize but rarely discuss openly – building sustained online communities is incredibly difficult, often unpredictable, and certainly not solved by sleek technology alone. We've all seen well-funded platforms with beautiful interfaces sitting empty while small groups of patients find life-changing support in basic WhatsApp groups or Reddit threads.

At BOOMITY|Health, we're taking a different approach. Rather than promising magical engagement formulas or perpetually active communities, we're designing for the reality of how patients actually connect – often in brief but meaningful interactions driven by specific needs at particular moments in their health journey.

The Value of Purposeful Moments

What I've learned through working with inspiring patient advocates is that the most valuable connections often happen around specific purposes. Consider the experience of pioneers like Victoria Gray, the first person in the world to receive gene-editing therapy for sickle cell disease. As a trailblazer, she had no predecessors to turn to for guidance and faced her treatment journey without the benefit of others' experiences. Not everyone in her life supported her decision.

Today, Victoria works to ensure others don't face the same isolation. Through community building, she's creating what she herself didn't have – support and understanding for those following in her pioneering footsteps.

Her work doesn't require thousands of daily active users to achieve its mission. It needs to be there at critical decision points for those facing similar choices. That's purpose.

When "Successful" Means Moving On

For 15 years, I've been a mentor to mothers of extremely premature babies in the NICU. My own son was born at 24 weeks, and I remember vividly the terror and isolation of those early days. Today, he's 18 and heading to college – an outcome many of these babies don't achieve, which is precisely why new mothers need both information and hope.

These mothers call when they're in crisis. They need someone who's navigated the terrifying maze of medical decisions, emotional trauma, and uncertain futures. And then, as they learn to handle their new reality, they call less. Eventually, they may not call at all.

I consider this a success, not a failure of "engagement."

This pattern repeats across countless health journeys. Patients often need intense connection at specific moments – diagnosis, treatment decisions, lifestyle adaptations – but not necessarily continuous engagement forever. Traditional metrics would label these as "failed" communities, but they're actually accomplishing exactly what patients need.

Technology as Enabler, Not Solution

One digital health tool that exemplifies this philosophy is CareConstitution's Inteleclinic platform. This system enhances telehealth with AI-powered assessments that can detect subtle neurological symptoms through a standard Zoom call. For patients with rare conditions like Myasthenia Gravis, this means objective, data-driven assessments without the burden of travel.

As Dr. Henry Kaminski, Professor of Neurology who works with the platform notes: "Despite how hard neurologists work to perform an examination, it ultimately has subjectivity to it. I think we can take that subjectivity out... and really have an ability to compare patients over time more consistently."

The technology itself isn't magical – it's the purpose it serves at specific moments in a patient's journey that creates value.

The Sustainable Cycle of Patient Communities

While some health journeys are time-limited – like my NICU mentoring experience – many patients with chronic conditions follow a different pattern that makes communities particularly valuable. What we've observed is a powerful cycle that sustains these spaces: today's newcomers often become tomorrow's advocates.

Patients who have navigated the complex terrain of a chronic condition and benefited from community support frequently develop a deep desire to "pay it forward." Someone who found clarity during their diagnostic odyssey becomes the guide who helps others through that same maze. The patient who mastered a digital health tool becomes the trusted advisor helping others maximize its benefits.

This creates a sustainable ecosystem where knowledge accumulates and transfers naturally. As I've learned from patient advocates like Tom Bartlett, who lives with Myasthenia Gravis, patients often grow weary of explaining their experiences to medical professionals and deeply value connecting with others who intuitively understand their daily realities. This shared understanding draws people to contribute long after their initial needs have been met.

The community platform becomes the infrastructure that enables these connections across time and geography. While one-on-one support is valuable, a thoughtfully designed community amplifies these interactions, allowing:

• Knowledge to be captured and shared beyond individual conversations

• Multiple perspectives to enrich understanding of complex conditions

• Patterns of experience to emerge that might not be visible in isolated interactions

• Different levels of engagement that meet people where they are in their journey

  
  

This is why building communities – not just facilitating isolated interactions – matters deeply. The quality of conversation becomes self-reinforcing as experienced members help newcomers, who eventually become experienced members themselves.

A Different Approach to Community Building

Rather than trying to build one massive, constantly engaged community, we're focused on enabling:

1. Purpose-Driven Spaces

Small, focused groups organized around specific needs: navigating new diagnoses, considering pioneering treatments, mastering digital health tools, or transitioning between care stages.

2. Value First, Engagement Second

Creating immediate value through expert content, moderated discussions, and thoughtfully curated resources – making it worth showing up even if you never post a single comment.

3. Success on Patients' Terms

Recognizing that a patient who visits once, gets exactly what they need, and never returns might represent our greatest success, not our greatest failure.

4. Fresh Reasons to Return

Regular events, new resources, and timely information give people reasons to check back in, even if they're not daily participants.

The Economics of Authentic Communities

Let's talk about the ecosystem too. For payers, patient communities can reduce unnecessary appointments by answering questions peer-to-peer. For physicians, this frees up time for more complex care. For pharma, understanding why patients start, stop, or continue treatments provides crucial insights.

But these communities must be authentic to work. Patients instantly recognize manufactured engagement or thinly veiled marketing. They're seeking genuine connection with others who truly understand their experience.

The Future of Patient Engagement

As breakthrough therapies like gene editing and advanced digital health tools continue to transform treatment possibilities, purpose-driven communities will only become more essential. The pharmaceutical companies developing these innovations have a unique opportunity to support authentic communities not as marketing channels, but as essential components of patient care and education.

At BOOMITY|Health, we're not promising to solve the unsolvable challenge of perpetual engagement. Instead, we're creating thoughtfully designed spaces where meaningful interactions can happen at the moments they matter most. Sometimes that's a years-long journey together. Sometimes it's a single, life-changing conversation.

Both are equally valuable in the complex ecosystem of human connection and healing.

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What has been your experience with health communities? Have you found the most value in ongoing engagement or in specific moments of connection? I'd love to hear your thoughts in the comments below.