It is estimated that there are over 5700 registered health charities in Canada. This does not include health-related non-profit organizations. So, one might ask “Why should I start a patient advocacy group?” After all, with so many established groups, it would seem that all disease areas should be covered. However, this is not necessarily the case. Below are five common reasons for starting a patient advocacy group in Canada.
ONE: Patient advocacy groups reduce stigma by bringing awareness to a disease or disease area.
Patients often face stigma and discrimination because of their health condition. The best ways to reduce stigma are through awareness and education. These are often the primary goals for many patient advocacy groups. Educating the public about a given disease will improve awareness and understanding. Further, educating healthcare providers can decrease delays in diagnosis. In many cases, the quicker a disease is diagnosed, the quicker a treatment plan can be employed. Additionally, long diagnostic journeys create additional stress, anger, and confusion for the patients and their families.
TWO: Patient advocacy groups provide social support.
Canada is a wide-spread country. As a result, patients and families can feel isolated, worried that no one else understands their unique experiences and concerns. A patient advocacy group can create and foster a sense of community and belonging for these individuals. A patient advocacy group can connect people with others that are facing (or have faced) similar obstacles. The community you build is not limited to patients and caregivers, either; it can also include healthcare providers, researchers, industry professionals, and other stakeholders, depending on the goals of your group. Whatever your network looks like, this unity is crucial as it creates a collective voice so that patients and families feel well-represented.
THREE: Patient advocacy groups guide patients through the healthcare system by providing resources.
The Canadian healthcare system can be overwhelming to navigate, especially for families newly impacted by diseases or for those with conditions that are not well-understood. A patient advocacy group can help these patients and their families by connecting them with resources and support services that can help them manage their condition. Additionally, having the established network discussed above allows patients to learn from others’ experiences.
FOUR: Patient advocacy groups can be fundamental in policy changes and research innovation.
Many patient groups are fundamental in sparking policy changes that improve access to healthcare services, promote patient-centered care, and support the needs and preferences of patients. Often this involves education policy makers or healthcare executives about unmet needs they may not be aware of. Patient advocacy groups can also promote and/or fund research to develop new treatments and approaches to care. This can involve working alongside basic and clinical researchers to develop new therapies or new approaches to care.
FIVE: Patient advocacy groups empower patients and improve health outcomes.
Patient advocacy groups can help empower patients to take an active role in their healthcare. This is done by providing them with tools and support necessary for them to make informed decisions about their care. Additionally, by promoting patient-centered care, advocating for policy changes, providing support and education, and empowering patients, patient advocacy groups can help improve healthcare outcomes and promote a more effective and equitable healthcare system.
As with many things, taking the first step is the hardest when it comes to starting a patient advocacy group. However, the decision to do so is invaluable and highly rewarding. By amplifying patient voices, navigating the complexities of healthcare, driving policy change, fostering community and support, raising awareness, and collaborating with healthcare professionals, these groups contribute to a more compassionate, inclusive, and responsive healthcare system that meets the diverse needs of the Canadian population. Overall, patient advocacy groups are essential partners in building a healthier and more equitable future for all.
