Diversity efforts are important for all patient advocacy groups as they create a space for patients that is more inclusive, representative, and innovative. Additionally, increased diversity provides a more holistic view of the disease/disease area the patient group is serving, allowing them to better understand and address the unique needs of their community. However, despite good intentions, many advocacy groups often struggle with diversity and inclusion due to systemic biases, limited resources, or the fact that some diseases disproportionately affect specific demographic groups. To address this, we have highlighted the following strategies to enhance diversity in patient advocacy groups:
5 Strategies for Increasing Diversity and Inclusion:
Reach Out to Underrepresented Communities: Actively reach out to individuals from known underrepresented communities who are affected by the condition your group represents. This may involve collaborating with community organizations, healthcare providers, or online support networks that cater to specific demographic groups. Additionally, it can help to forge partnerships with organizations and stakeholders that have expertise in serving specific demographic groups, as this can amplify the advocacy group’s reach and impact in other communities.
Language Accessibility: Increase the number of services and resources available in languages other than English. In Canada, there is a push to encourage non-governmental organization to provide resources and services that are available in both English and French. Additionally, according to the most recent data, over 200 languages are spoken in Canada. Some ways to increase language diversity include translating key materials, ensuring material is culturally sensitive, and offering interpretation services during meetings or events.
Diversify Your Support Services: It is important to recognize that individuals from diverse backgrounds may have different needs and preferences when it comes to support services. Diversifying your support services broadens the range of resources and assistance available to your patient community. Some ways to do this are by offering different types of support (e.g., financial, emotional, informational, etc.) and providing support through multiple mediums (e.g., phone, email, in-person, etc.).
Increase Representation in Leadership and Board Membership: One of the clearest ways to demonstrate your group’s commitment to inclusion is to encourage diversity in the leadership. By actively recruiting individuals from underrepresented communities to serve on the board or in other leadership roles, you can encourage decision-making processes that reflect the diversity of your group’s members.
Frequent Feedback and Evaluation: To get a clearer picture of how your community feels about the representation within your group, it is important to regularly solicit feedback from members. This can identify areas and suggestions for improvement. It is also crucial to create mechanisms for ongoing evaluation and accountability to ensure that diversity remains a priority within the organization.
By taking these proactive steps, even the smallest patient advocacy group can create a more diverse and inclusive community that supports individuals from all backgrounds affected by the disease. Embracing diversity not only enriches the collective experience but also strengthens the group’s ability to advocate for equitable access to care, resources, and support for all members your patient community.
