Diversity in RareCare

A diverse mix of voices leads to better discussions, decisions, and outcomes for everyone – Sundar Pichai, CEO at Alphabet Inc.

The RareCare evaluation of England’s rare disease action plan is a critical opportunity to gain a realistic view of the current rare disease landscape in England. The key to a meaningful evaluation lies in the inclusion of diverse voices, especially those who have been underserved by the system thus far and from whom we seldom hear.  We have spoken from the beginning about how this research should be done with and for the rare disease community, driven by principles of equality, diversity and inclusion as well as co-creation and transparency. We have carefully considered key issues to frame our approach and aim for something in which the community will see huge value:

1. Representation of Marginalised Voices

Intentional inclusion of underrepresented and underserved groups. These groups - rural populations, ethnic minorities, lower-income individuals, and others - face greater barriers to diagnosis and care. If the evaluation process involves them, we are more likely to get an accurate picture of the impact of England’s rare disease action plan on all those affected by a rare disease. We are grateful to be working with Patient Advocacy Groups who have the trusting relationships and expertise to help us engage with these communities.

2. Focus on Health Disparities

Health equity is explicitly part of the RareCare evaluation. We are working with 8 diverse Patient Advocacy Groups to consider health disparities across different regions, racial and ethnic groups, and socioeconomic statuses, as well as impact on other groups to be identified. Again, the success of engagement will stem from the trusting relationships and expertise of the groups with whom we are working.

3. People living with a rare disease and caregiver input

We must include firsthand input from those who are directly affected. We are working to maximise opportunities to engage directly with those with rare diseases. With over 7000 rare diseases, limited time, and budget constraints, difficult decisions about how to achieve this will be needed. We are working closely with Patient Advocacy Groups who specialise in reaching diverse populations within the rare disease community, and we will create opportunities for direct participation through a Delphi panel, interviews and focus groups undertaken by peer researchers, and surveys.

4. Data Transparency and Accountability

RareCare will be backed by transparent data collection and reporting. The more diverse the participants in RareCare, the more the data will have to tell us. It is vital not only that we report on what the data tells us but also that we are honest about its limitations. Reporting on both the strengths and limitations of the data will help us to be realistic about what we know and what is still left to be discovered and researched.

If advocacy efforts continue to emphasise equity and inclusivity, this evaluation can serve as a powerful tool to inform future action plans, ensuring that all rare disease patients -regardless of their background -receive the care, treatment, and support they need.

Do you think we are taking the right approach in creating a programme that actively seeks to reach a diverse mix of people?