Inclusive Voices in Patient Organisations: Building Representation and Equity

The Inclusive Voices in Patient Organisations report by the Patient Inclusive Advocacy Foundation highlights leadership gaps in diversity and inclusion across eight countries. It identifies systemic barriers, shares successful practice and outlines a roadmap for embedding DEI in patient organisations. The report calls for urgent, sustained action to ensure that patient advocacy genuinely reflects and serves all communities.

Key Points

• Patient organisations often lack leadership diversity and fail to reflect their communities.
• Systemic barriers like bias and limited networks block underrepresented groups from leadership.
• Inclusive leadership boosts innovation, trust and engagement in patient advocacy.
• Organisations must collect data, set targets and build diverse advisory groups to drive change.
• Sustained DEI efforts need long-term commitment, partnerships and leadership accountability.

The Inclusive Voices in Patient Organisations report, published by the Patient Inclusive Advocacy Foundation and developed by the Patient Advisory Committee on Equal Representation, offers a detailed and far-reaching analysis of diversity, inclusion and equity within patient organisations across Belgium, the Netherlands, the United Kingdom, Germany, Spain, Australia, the United States and Canada. Drawing extensively on data analysis, case studies and qualitative insights, the report highlights key representation gaps, showcases effective practices and presents practical recommendations to build sustainable and inclusive governance structures in patient advocacy.

A Historical Perspective on Civil Society Engagement

Efforts to promote inclusivity within patient organisations are deeply rooted in the broader historical evolution of civil society engagement. Landmark events such as the 1945 establishment of consultative arrangements for non-governmental organisations within the United Nations, the 1975 Declaration on the Rights of Disabled Persons and the World Health Organisation's 2024 resolution on social participation in health systems have progressively strengthened the role of patient organisations in influencing global health policy. This historical context highlights the need to continue embedding principles of equity and inclusion into every aspect of patient advocacy.

Despite these advances, many patient organisations today do not fully reflect the diversity of the populations they serve. The report identifies persistent obstacles faced by women, racial and ethnic minorities, disabled individuals, LGBTQ+ people and immigrants in accessing leadership positions. Without a determined and sustained effort to incorporate diversity, equity and inclusion (DEI) principles, organisations risk reinforcing the very systemic inequalities they seek to address. The Patient Inclusive Advocacy Foundation calls for a proactive and strategic commitment to dismantling exclusionary structures and fostering genuinely inclusive leadership at every level.

The Current State of Representation

One of the report's most significant findings is the widespread absence of comprehensive diversity data within patient organisations. While broader insights from non-profit and corporate sectors provide some benchmarking, specific sector-based information remains largely unavailable. Where data is accessible, it illustrates considerable underrepresentation across various leadership roles:

• In the United States, only 6% of non-profit board chairs identify as LGBTQ+, compared to 8% of the general population.
• In Canada, merely 13% of health non-profit board members are immigrants, although immigrants account for 23% of the national population.
• In the Netherlands, only 7% of board members at top companies come from ethnically diverse backgrounds, compared to 25% of the overall population.
• In Germany, women hold just 26% of board positions in leading companies, despite representing half of the general population.
• In the United Kingdom, disabled individuals account for 14% of board chairs in charities focused on physical health, compared to 18% within the broader population.

These discrepancies reveal a significant disconnection between the composition of organisational leadership and the communities these organisations aim to represent. Challenges are even more pronounced for individuals who face overlapping forms of disadvantage, such as those affected simultaneously by socioeconomic barriers, limited education opportunities and geographic isolation.

Challenges Hindering Inclusion

The report identifies several entrenched barriers that prevent greater diversity and inclusion within patient organisations:

• Data Deficiency: Without the systematic collection of demographic data, organisations cannot meaningfully evaluate or improve their diversity performance.
• Network Exclusion: Marginalised individuals often lack access to influential networks that facilitate leadership opportunities.
• Unconscious Bias: Decision-making processes are often affected by ingrained biases unless explicitly countered through structured interventions.
• Resource Constraints: Many organisations struggle to secure stable, long-term funding necessary to embed DEI initiatives sustainably.
• External Resistance: Politicisation of diversity efforts has, in some instances, led to societal and institutional pushback, undermining momentum for change.

Furthermore, the phenomenon of "diversity fatigue" — where enthusiasm for DEI diminishes over time without structural integration — is a real threat to lasting progress. Patient organisations must anticipate and address this tendency if they are to maintain genuine commitment over the long term.

Opportunities Through Inclusive Leadership

While challenges are considerable, the benefits of inclusive leadership are equally substantial. Patient organisations that fully embrace diversity and equity not only strengthen trust within the communities they serve but also enhance the relevance, effectiveness and credibility of their advocacy work.

Key impacts identified in the report include:

• A 1.7 times higher likelihood of organisations leading innovation when they have diverse leadership.
• A 20% improvement in satisfaction levels among minority patients when organisations implement culturally competent practices.
• A 25% reduction in staff turnover rates when inclusive leadership programmes are introduced.
• A 10% stronger revenue growth for organisations with diverse leadership teams compared to their peers.
• A 30% increase in participation rates in health programmes when community advisory councils are established.

Through inclusive leadership, patient organisations can better challenge assumptions, create innovative solutions and build governance structures that are truly reflective of the people they aim to support.

Promising Practices in Action

The report documents numerous examples of patient organisations implementing practices that have successfully promoted greater inclusion and diversity. These include:

• Demographic Surveys: Systematically collecting anonymous demographic data to identify gaps and plan targeted strategies.
• Setting Targets: Defining concrete diversity goals at the board and leadership levels to drive measurable progress.
• Establishing Advisory Groups: Creating diverse patient advisory bodies to ensure marginalised voices influence organisational decision-making.
• Career Development Initiatives: Investing in mentorship schemes, leadership training and paid internship programmes to build diverse leadership pipelines.
• Bias-Reducing Recruitment Practices: Introducing measures such as name-blind shortlisting to remove potential biases during hiring processes.

Practical examples of success cited in the report include:

• Canteen Australia, which established a Diversity and Inclusion Advisory Group to ensure its services are attuned to the needs of diverse young people.
• National Breast Cancer Foundation (Australia), which created a board skills matrix to guide diverse and strategic board recruitment.
• Cancer Research UK, which introduced paid internships to open opportunities for underrepresented groups.
• Luminus SA (Belgium), which conducts regular diversity surveys to inform and refine its inclusion strategies.

These examples demonstrate that targeted, deliberate actions can lead to tangible improvements in representation and organisational responsiveness.

Recommendations for Sustainable Change

The report proposes a roadmap of short-, medium- and long-term actions for advancing diversity and inclusion in patient organisations, extending to funders, policymakers and healthcare institutions.

Short-Term Priorities (within 12 months)

• Broaden outreach efforts to include underrepresented communities more systematically.
• Create diverse patient advisory groups with real influence over decisions.
• Conduct and publish anonymous demographic surveys to establish a baseline for diversity metrics.

Medium-Term Actions (1-3 years)

• Launch tailored leadership development programmes aimed at nurturing talent from underrepresented backgrounds.
• Embed DEI principles into the fundamental governance structures of organisations.
• Set measurable diversity targets and implement transparent monitoring processes.

Long-Term Strategies (beyond 3 years)

• Institutionalise DEI principles in mission statements, charters and leadership selection frameworks.
• Forge long-term strategic partnerships with diverse community organisations.
• Hold leadership bodies accountable for embedding and sustaining inclusive practices over time.

Beyond patient organisations themselves, the report urges policymakers to enact laws facilitating the collection of diversity data and encourages funders to offer multi-year financial support for DEI initiatives, thereby providing the stability needed for long-term cultural transformation.

Healthcare institutions, meanwhile, are called upon to build partnerships with inclusive patient organisations and to champion diversity within national and international healthcare policy forums.

Methodology and Limitations

The Inclusive Voices in Patient Organisations report is based on a robust mixed-methods research approach, combining analysis of crowd-sourced survey data with qualitative case study insights. Research efforts were concentrated on examining leadership diversity and governance structures across eight countries.

Nonetheless, the report acknowledges several limitations:

• Inconsistent data collection practices across different countries and sectors.
• Potential participation bias, as organisations already engaged in DEI efforts were more likely to contribute data.
• Challenges in cross-country comparisons due to differing legal frameworks, cultural norms and definitions of key demographic categories.
• The reliance on self-reported information, which can result in gaps or inconsistencies in data quality.

As such, the report presents valuable indicative trends rather than offering a fully comprehensive or standardised global analysis.

Conclusion: Sustained Commitment for Lasting Change

The Inclusive Voices in Patient Organisations report delivers a powerful and unequivocal message: diversity, equity and inclusion are not optional extras but essential foundations for building legitimate, effective and resilient patient advocacy organisations.

Embedding DEI principles at every level of governance and practice is crucial. Policymakers, funders and healthcare institutions must play a proactive role in enabling sustainable change through consistent support, clear legal frameworks and appropriate investment.

Achieving true and lasting inclusion demands institutional bravery, unwavering accountability and a steadfast refusal to yield to external resistance. By embracing the recommendations outlined in this important report, patient organisations can lead the charge towards a future where every patient's voice is genuinely heard, valued and acted upon.

Conflict of Interest

None