"Mapping Stakeholder Engagement in Endometriosis Care Innovation: Insights from the VendoR Project"

This study utilizes a virtual stakeholder mapping workshop to identify key actors, their influence and interest levels, and the primary drivers and barriers affecting the adoption of digital health innovations for endometriosis care in Ireland, providing a strategic foundation for the VendoR project's co-design of patient-centred solutions.

The Gist

Imagine the healthcare system for endometriosis as a giant, bustling construction site where a new, high-tech building (a digital health solution) is supposed to be built to help millions of women. But right now, the site is chaotic. The blueprints are scattered, the workers are confused, and the people who actually need the building (the patients) are standing outside the fence, shouting instructions that no one seems to hear.

This paper, titled "Mapping Stakeholder Engagement," is essentially the project manager's site survey. The researchers gathered everyone involved in the "construction" to figure out who holds the keys, who holds the tools, and who is just watching from the sidelines.

Here is the breakdown of their findings, translated into everyday language:

1. The Goal: Organizing the Chaos

Endometriosis is a painful condition affecting about 1 in 10 women, but fixing it is like trying to assemble a puzzle with missing pieces. The doctors, the hospitals, the tech companies, and the patients are all trying to build a solution, but they aren't on the same page. The researchers wanted to draw a map to see exactly who is doing what, so they could build a better digital tool (the "VendoR project") that actually works for everyone.

2. The Method: The "Power vs. Passion" Game

To make sense of the crowd, the team held a virtual meeting (like a giant online whiteboard session) and played a sorting game. They asked everyone to place different groups on a grid based on two questions:

• How much power do you have to change things? (Influence)
• How much do you care about this specific project? (Interest)

3. The Results: Who is Where?

The map revealed four distinct groups, like characters in a play:

• The "Power Players" (High Power, High Interest): These are the heavy hitters who want to fix the problem and can make it happen. Think of them as the Head Architects and Lead Contractors. This group includes the national health service (HSE), specialist medical centers, regular doctors (GPs), and the Endometriosis Association. They have the budget and the authority to greenlight the project.
• The "Passionate Crowd" (Low Power, High Interest): These are the people who care the most but have the least say in the big decisions. They are like the residents living in the neighborhood who are desperate for the new building but can't sign the checks. This group includes the patients, their families, and online support groups. They have the energy and the ideas, but they need the "Power Players" to listen.
• The "Distant Giants" (High Power, Low Interest): These are the Big Bosses who hold the keys to the kingdom but aren't currently focused on this specific problem. This includes top policymakers, hospital managers, and the education sector. They have the power to unlock resources, but they need to be convinced that this project matters to them.
• The "Quiet Observers" (Low Power, Low Interest): These are the groups currently just watching from the fence, neither driving the project nor deeply invested yet.

4. The Obstacles and The Fuel

The researchers also looked at what was helping the project move forward and what was slowing it down.

• The Fuel (Drivers): The biggest engine for this project is the loud, united voice of the patients. When patients advocate together, it wakes up the "Power Players." Also, the health system (HSE) is starting to realize that digital tools are the future, which is a green light for innovation.
• The Roadblocks (Barriers): The construction site is full of potholes.
  • The "Wait Time" Trap: Women often wait years for a diagnosis, which is like waiting for a bus that never comes.
  • The "Knowledge Gap": Some doctors don't know enough about the condition, like a mechanic trying to fix a car they've never seen before.
  • Tech Fear: Some people are scared of new gadgets, worried they are too complicated.
  • Running Out of Gas: There simply isn't enough money or time to keep everyone motivated.

The Bottom Line

The main takeaway is that you can't just build a digital health tool and hope it sticks. You have to invite everyone to the table.

The study concludes that to succeed, the project needs to be a co-op. The "Power Players" need to stop ignoring the "Passionate Crowd" and start listening to the patients. At the same time, the "Distant Giants" need to be woken up and given a clear reason to care.

If they can get everyone working together—designing the tool with the patients, not just for them—they can finally build a system that is sustainable, fair, and actually helps women manage their pain. It's about turning a chaotic construction site into a well-oiled machine where everyone has a role to play.

Technical Summary

1. Problem Statement

Endometriosis, a chronic condition affecting approximately 10% of women of reproductive age globally, is currently characterized by fragmented care pathways and limited treatment efficacy. In the specific context of Ireland, the implementation of digital health innovations to address these gaps faces significant uncertainty regarding stakeholder alignment. The core problem addressed by the study is the lack of a structured understanding of who the key actors are in the endometriosis ecosystem, how their interests and influence intersect, and what specific systemic drivers or barriers impede the adoption of innovative digital care solutions. Without this mapping, digital health initiatives risk misalignment with user needs or institutional realities, leading to poor uptake and sustainability.

2. Methodology

The study employed a qualitative, participatory research design centered on a virtual stakeholder mapping workshop.

• Participants: A diverse cohort representing six key sectors: healthcare, policy, education, technology, academia, and patient communities.
• Data Collection Tool: A structured MS Teams Whiteboard was utilized to facilitate real-time collaboration and visualization.
• Analytical Framework:
  1. Stakeholder Identification: Participants collaboratively generated a comprehensive list of relevant entities.
  2. Categorization: Stakeholders were positioned on a classic Power-Interest (Influence-Interest) Matrix to visualize their relative standing.
  3. Qualitative Analysis: Participants provided narrative insights regarding the specific factors (enablers and constraints) influencing engagement with digital health innovations.

3. Key Contributions

The primary contribution of this work is the development of an evidence-informed stakeholder landscape specific to endometriosis care innovation in Ireland.

• Strategic Visualization: It moves beyond theoretical lists to a visualized matrix that categorizes stakeholders based on their actual capacity to drive change (Influence) and their motivation to do so (Interest).
• Gap Identification: The study explicitly identifies "engagement gaps," particularly the disconnect between high-influence actors who lack interest and high-interest actors who lack influence.
• Framework for Co-Design: It establishes a foundational framework for the VendoR project, ensuring that subsequent digital health interventions are developed through co-design, co-creation, and co-production principles rather than top-down imposition.

4. Key Results

The analysis revealed a distinct distribution of stakeholders across the four quadrants of the Influence-Interest Matrix, alongside specific thematic drivers and barriers:

Stakeholder Distribution:

• High Influence / High Interest (Key Players): The Health Service Executive (HSE), specialist endometriosis centres, general practitioners (GPs), and the Endometriosis Association of Ireland. These groups are critical for immediate implementation.
• High Interest / Low Influence (Context Keepers): Patients, their families, and online communities. While highly motivated, they currently lack the structural power to drive systemic change alone.
• High Influence / Low Interest (Keep Satisfied): Policymakers, hospital managers, and the education sector. These actors hold the resources and authority to enable change but currently show low engagement or awareness.
• Low Influence / Low Interest (Minimal Effort): (Implied by the distribution, though specific groups were not highlighted as a primary focus in the abstract).

Drivers of Innovation:

• Strong patient advocacy movements.
• Institutional support, specifically engagement from the HSE.
• A growing general awareness and acceptance of digital health tools.

Barriers to Adoption:

• Systemic: Prolonged diagnostic delays and resource constraints.
• Knowledge: Gaps in clinical knowledge regarding endometriosis and digital tools.
• Psychological/Technical: "Technology anxiety" among users and providers.
• Operational: Challenges in sustaining long-term engagement with digital platforms.

5. Significance and Implications

The findings underscore that successful digital health innovation in endometriosis care cannot rely solely on technological superiority; it requires intentional, well-resourced strategic management of human and institutional dynamics.

• Strategic Realignment: The study suggests that future interventions must specifically target "High Influence/Low Interest" actors (e.g., hospital managers, policymakers) to secure necessary resources and policy support.
• Empowerment: There is a critical need to elevate the voices of "High Interest/Low Influence" groups (patients) to ensure the solutions are truly patient-centred.
• Sustainability: By addressing systemic barriers like diagnostic delays and technology anxiety, the VendoR project aims to create a sustainable ecosystem where digital tools are not just deployed but effectively integrated into the care pathway.

In conclusion, this paper provides a critical roadmap for navigating the complex socio-technical landscape of endometriosis care, arguing that stakeholder mapping is a prerequisite for the successful co-creation of digital health interventions that can bridge the gap between current fragmented care and future innovative solutions.