Our hybrid event is not to be missed. Let’s COCO: Celebrating the Doers is where impact meets action for rare disease and underserved communities. Taking place both in-person at the University of Birmingham and online, this unique gathering brings together patient advocates, healthcare professionals, researchers, and educators from across the UK and beyond.

As challenges persist for those living with rare diseases—especially in marginalised and underserved groups—EDIRA’s Let’s COCO event shines a light on the transformative power of patient engagement and truly inclusive research. By elevating diverse voices and showcasing real-world solutions, we’re building a more equitable future in health, education, and research. Join us as we celebrate the changemakers driving health equity and shaping the next chapter for inclusive research and practice.

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Powering Health Equity Through Collaboration & Patient Voice

By Dr. Sondra Butterworth

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Why We Celebrate: Elevating the Patient Voice

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From Barriers to Breakthroughs: The EDIRA Journey

EDIRA 1 (2023): Identifying Barriers

Our inaugural event in 2023 brought together diverse voices from across the rare disease and research landscape. Together, we mapped out the barriers to inclusion—psychosocial, linguistic, economic, and structural—and highlighted the urgent need to embed the patient voice at every stage. This directly echoes the priorities of the UK Rare Diseases Framework:

“We will ensure the patient voice remains central to the implementation of the framework…there will be an assurance that there is representation from those whose voices can often go unheard, including patients from Black and Minority Ethnic (BAME) or disadvantaged backgrounds.”
— Department of Health and Social Care, 2021

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EDIRA 2 (2024): Building Trust

EDIRA 2, we explored the vital link between trust and success in health equity. Trust is not given—it is earned through transparency, co-creation, and authentic patient engagement. We learned that when patients are partners, not just participants, outcomes improve for everyone. This ethos aligns with the NHS Long Term Plan’s commitment to “raising the voice of patients and communities” (NHS Long Term Plan, 2019) and with the NHS Race and Health Observatory’s call for:

“Genuine partnership with communities to address the root causes of health inequalities and to ensure that lived experience shapes decision-making at every level.”
— NHS Race and Health Observatory, 2024

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EDIRA 3 (2025): Celebrating the Doers

This year, we celebrate the doers—the individuals and organisations turning frameworks and guidance into real, measurable change. Their stories are powerful reminders that collaboration and patient engagement are not just ideals, but practical strategies for achieving equity.

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The Book of Doers: Sharing What Works Across Five Key Areas

A highlight of this year’s event is the launch of our Book of Doers, produced in partnership with Costello Medical and co-edited by Associate Professor Dr. Andrew Mitchell. This publication captures and celebrates the stories, strategies, and practical wisdom of those leading the way in inclusive research and patient engagement. The Book of Doers is organised around five key areas of collective expertise and action:

Area	Description
Equality, Diversity, and Inclusion (EDI)	Dismantling barriers to inclusion, building trust, and fostering meaningful public participation and engagement (PPIE). Diverse perspectives shape every stage of research and service delivery.
Inclusive Research and Practice	Innovative methods to promote health literacy, patient-centricity, and diversity in clinical trials. Participatory research and advocacy groups build trust and ensure research is accessible and relevant.
Medical and Healthcare Education	Raising awareness about cultural competence and rare disease inclusion in medical education. Diversifying curricula and equipping future professionals to serve all populations with empathy and expertise.
Rare Disease Advocacy	Elevating the voices of those living with rare diseases. Narrative-based and trauma-informed approaches shape policy, improve support, and drive the patient voice as a catalyst for change.
Service Improvement and Innovation	Practical solutions and positive change, drawing on frameworks like the UK Rare Diseases Framework and Anti-Racist Wales Action Plan. Applied behavioural science, digital health, service co-design, and quality improvement for rare disease communities.

The Book of Doers is more than a collection of stories—it is a living resource and practical toolkit for anyone working to make health research, care, and advocacy more inclusive, equitable, and effective.

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Aligning with the NHS 10-Year Plan

This event aligns with some of the ambitions of the NHS 10-year Plan, which places patient voice and health equity at the heart of healthcare transformation. The Plan’s focus on “personalised care,” “addressing health inequalities,” and “empowering patients to shape their care” resonates deeply with EDIRA’s mission and the ethos of our network.

“To realise the ambition of this plan, we will create a new NHS operating model, to deliver a more diverse and devolved health service. Today, power is concentrated in Whitehall, rather than distributed among local providers, staff and citizens”.”
the plan has an ambition to “introduce a new patient choice charter, starting in the areas of highest health need. This will ensure the NHS is receptive and reactive to patient preference, voice and choice”.

10-Year Plan for England: fit for the future

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Why This Matters: Health Equity is Everyone’s Business

The journey towards inclusive research and health equity is ongoing. The barriers are real, but so is our collective power to overcome them. By centring the patient voice, fostering genuine collaboration, and sharing what works, we can create a health system that serves everyone—fairly and fully.

“We cannot improve what we do not measure, and we cannot measure what we do not value. Valuing lived experience is the first step to meaningful change.”
— NHS Race and Health Observatory, 2024 (NHS Race and Health Observatory)

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