Since 2015, 14 cyberattacks have occurred against Canadian healthcare systems [Harish et al, 2023]. Nine of those attacks wanted ransoms to be paid and at least six of those attacks were believed to have compromised patients’ health records. Patient privacy is a cornerstone of ethical healthcare practice, safeguarding individuals’ personal information and ensuring their autonomy and dignity are respected. In Canada, robust legal frameworks exist to preserve patient privacy rights, but as noted by the statistics listed above, challenges persist in an increasingly digitized and interconnected he ..read more

We have previously discussed the process of obtaining a charitable gaming license, a mandatory pre-requisite for an organization wanting to host a gaming event like a raffle, bingo night, or casino. These types of events have been a cornerstone of fundraising efforts for patient advocacy groups, offering unique opportunities to engage their community while generating much-needed funds. However, like any fundraising strategy, charitable gaming comes with its own set of pros and cons. In this article, we explore these aspects to aid patient advocacy groups in making informed decisions about inco ..read more

Charitable gaming offers an opportunity for patient advocacy groups to raise funds for their cause while engaging local community members. In Canada, obtaining a charitable gaming license is a crucial step for any group looking to host events like bingo, raffles, or casino nights. However, the process can be intricate, involving various regulations and requirements. In this article, we discuss the considerations and general steps for obtaining a charitable gaming license in Canada. What is Charitable Gaming? Charitable gaming refers to fundraising activities held by eligible organizations, wit ..read more

At the heart of most patient advocacy groups are dedicated volunteers who contribute their time and energy to support those in need. However, volunteers have other commitments that can pull their time away from advocating for your group. Therefore, motivating and mobilizing these volunteers is essential to foster long-term allegiance. In this article, we provide strategies for advocacy groups to effectively inspire their teams of volunteers. Clarify Your Mission and Vision: The foundation of any successful advocacy group lies in its mission and vision. Articulating a clear and compelling purpo ..read more

Patient advocacy groups often face the choice between operating as a non-profit or a charity. Both structures offer unique advantages and challenges depending on the missions, resources, and goals of a patient advocacy group. Understanding the nuances of these distinctions is crucial to make an informed decision about how your patient advocacy group will operate. Here, we explore the pros and cons of being a non-profit versus a charity in Canada. Non-Profit Organizations  Non-profit organizations are established to pursue a specific mission or address a particular societal need without th ..read more

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 ..read more

There are many ways to raise funds for a patient advocacy group. The more traditional fundraising methods include activities such as bake sales, community runs, golf tournaments, and galas. However, grants are a popular means of fundraising. These can be unsolicited grants that an advocacy group submits to various organizations, government entities, and/or companies. Or they can be grants in response to a request for proposal (RFP) that companies/organizations/governments may publish. Regardless of the type of grant, there are certain fundamentals that each grant should include to increase the ..read more

In clinical trials, primary outcome measures play a pivotal role in determining the effectiveness of treatments and interventions. However, understanding primary outcome measures can be challenging for both patients and advocacy groups. In this article, we will be demystifying primary outcome measures and highlighting the significant role patient advocacy groups can play in informing them. What are Primary Outcome Measures? Primary outcome measures are measured by researchers to assess the effect of an intervention/treatment in a clinical trial. These measures are carefully selected based on s ..read more

There are many ways to raise funds for a patient advocacy group. The more traditional fundraising methods include activities such as bake sales, community runs, golf tournaments, and galas. However, grants are a popular means of fundraising. These can be unsolicited grants that an advocacy group submits to various organizations, government entities, and/or companies. Or they can be grants in response to a request for proposal (RFP) that companies/organizations/governments may publish. Regardless of the type of grant, there are certain fundamentals that each grant should include to increase the ..read more

Patient advocacy groups play a crucial role in providing support and guidance to individuals as they make difficult medical decisions, including whether to participate in clinical trials. As trusted sources of information and advice, patient groups have a responsibility to ensure that their guidance is well-informed and comprehensive. This is done, in part, by considering and communicating both the advantages and disadvantages of clinical trial participation. Advantages: Access to Cutting-Edge Treatments: Clinical trials often involve experimental treatments or medications that are not yet av ..read more