Designing Co-Creation Platforms for Inclusive Healthcare Innovation

Published: 28 Jul 2025

Reading Time: 3 minutes

In healthcare, the word “engagement” has become a catchall—applied to everything from patient focus groups to survey participation. But in the context of clinical research, engagement alone is not enough. If stakeholders are invited to give input but not power, progress stalls.

True innovation requires co-creation—a structured process that invites patients, clinicians, researchers, and community partners to shape solutions together. Co-creation transforms stakeholders from passive participants into active collaborators.

As design thinker and author Tim Brown famously said, “Design is too important to be left to designers.”¹

The same holds true for healthcare. Systems built without multi-stakeholder input—especially from those historically excluded—inevitably fail to deliver inclusive, impactful solutions.

The Limitations of Traditional “Engagement”

Patient-centered care has been a stated goal of healthcare institutions for decades. Yet in clinical research, many patients remain “invisible”; consulted late or only superficially.

According to the National Academies of Sciences, “Engagement efforts that lack structure, transparency, and shared decision-making often reinforce existing power imbalances rather than correct them.”²

What’s more, engagement efforts are typically:

Reactive rather than proactive
One-way (input) instead of two-way (co-design)
Fragmented, not integrated into institutional infrastructure

In the rare disease space, where patient knowledge is often deeper than institutional understanding, this dynamic can be especially damaging.

The Value of Co-Creation

Co-creation is not a new concept. In consumer product design, it’s long been used to drive adoption and relevance. In healthcare, however, it’s still emerging—particularly in clinical trials, digital platforms, and system redesign.

Co-creation builds:

Trust: Especially among underserved communities who have historically been excluded.
Efficiency: Collaborative design reduces rework, misalignment, and resistance.
Equity: Elevating lived experience ensures solutions reflect real-world needs.

Dr. Melody Goodman, Associate Dean for Research at NYU School of Global Public Health, emphasizes that “When you involve community stakeholders from the beginning, you design better studies and get better results.”³

What a Co-Created Platform Looks Like

At Elevate Impact, we’ve designed our platform for collaboration, not just communication. The difference is structural. Co-creation is embedded in five key design features:

1. Collaborative Project Boards

A digital space where members, from hospitals to advocacy groups, post collaboration requests (e.g., clinical trial partners, advisory board members) and respond in real time.

2. Open Knowledge Exchanges

Peer-moderated discussion boards where verified users share insights, troubleshoot challenges, and spotlight best practices in trial recruitment, data sharing, and governance.

3. Stakeholder-Driven Learning Paths

Courses and microlearning modules built with input from rare disease patients, researchers, and public health leaders—ensuring content reflects real-world complexity.

4. Showroom for Shared Outcomes

A public-facing gallery that highlights projects born from platform collaboration, including toolkits, white papers, and impact dashboards.

5. Tiered Access Models

To reduce barriers, Elevate Impact offers free access to patients, caregivers, and advocacy groups, with paid membership tiers for institutions—making collaboration equitable and sustainable.

Real-World Proof: PCORI and Co-Creation

The Patient-Centered Outcomes Research Institute (PCORI) has been a pioneer in co-creation models for research design. Their requirement for patient engagement as a funding condition has changed how studies are shaped from the start.

In a 2021 report, PCORI concluded: “Studies with co-created designs were more likely to meet recruitment goals, complete on time, and produce usable findings for real-world application.”⁴

This is the future of healthcare research: intentional design that distributes power, not just information.

Beyond Tools: A Cultural Shift

Technology is a vessel. But culture determines whether co-creation takes root.

To succeed, organizations must:

Train leaders to manage ambiguity and shared ownership
Reward collaboration, not just individual achievement
Commit long-term, avoiding the tokenization of community involvement

As Dr. Rishi Manchanda, CEO of HealthBegins, notes: “To redesign healthcare for equity, we need not just new tools—but new relationships.”⁵

Healthcare leaders must move from asking “How do we engage them?” to “How do we build with them?”

Platforms alone won’t transform systems. But platforms designed for co-creation—that embed shared governance, reciprocal learning, and community-led design—can rewire the very foundation of healthcare innovation.

Because participation is a starting point. Co-creation is the future.

References:

Brown, T. (2009). Change by Design: How Design Thinking Creates New Alternatives for Business and Society. Harvard Business Press.
National Academies of Sciences, Engineering, and Medicine. (2017). Integrating Patients into the Development of Medical Products. The National Academies Press.
Goodman, M. S., et al. (2020). “Engaging Stakeholders in Research: Examples from the Field.” Health Affairs Blog.
Patient-Centered Outcomes Research Institute (PCORI). (2021). Engagement in Health Research Literature Explorer: Summary of Engagement Effects. https://www.pcori.org
Manchanda, R. (2019). “Social Determinants of Health Begin With Community Relationships.” Health Affairs Blog.

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