Introduction

The role of Patient Advocacy Groups (PAGs) in Canada's Health Technology Assessment (HTA) process has evolved significantly over the last decade. Since Canada’s Drug Agency (CDA) began publishing patient input submissions in 2014, the involvement of PAGs has steadily increased, becoming essential in shaping decisions about drug reimbursement. 

This report delves into key trends over the past ten years, highlighting the rise in patient input, the growing diversity of PAGs involved, and the increasing collaborations between these groups. Early education and PAG involvement in the drug development is critical as their role in HTA submissions can significantly impact access to new therapies.

The Rise of Patient Input in HTA Submissions

One of the clearest trends in the data is the steady rise in the inclusion of patient input in HTA submissions. By 2023, 95% of all submissions contained some form of patient input, compared to just 18% in 2014 (see Figure 1). Figure 1 illustrates the percentage of total HTA submissions that included patient input, showing the upward trend over the last decade. This dramatic increase highlights how central patient perspectives have become in the decision-making process of the CDA.

Figure 1

Patient Input & Reimbursement Outcomes

Beyond the overarching trend of growth, the data also reveals that patient input submissions tend to correspond with more favorable outcomes. Figure 2 presents the percentage of submissions with patient input and their respective outcomes over time. Cumulatively over the last decade, 65% of the cases that resulted in a positive reimbursement recommendation, patient input was included, compared to 56% in cases where the recommendation was not to reimburse. This suggests that submissions receiving a favorable reimbursement outcome were more likely to include patient input than submissions that didn’t. However, this disparity has disappeared in recent years as more submissions now routinely contain patient perspectives and therefore simply including it isn’t sufficient. 

Figure 2

PAG Participation In HTA Submissions is Expanding

Another notable trend is the expanding involvement of different PAGs in the HTA process. Over the years, the number of unique PAGs submitting patient input has steadily increased with 25% over the last couple years contributing for the first time. This growing participation shows that more organizations are recognizing the value of engaging in the HTA process to advocate for their communities (see Figure 3). In Figure 3, we see the rise in the total number of unique PAGs submitting patient input broken down by number of new and returning contributors.

Still, only 15% of Canadian PAGs have contributed to an HTA submission. This points to significant opportunities for more PAGs, especially those representing underrepresented patient populations, to get involved. Engaging a more diverse set of voices in the HTA process is crucial to ensure that the needs of all patients are considered in these important reimbursement decisions.

Figure 3

The Power of Collaboration Among PAGs

A major shift in the landscape after 2020 is the rise in collaboration between multiple PAGs on a single submission. Our findings show that the majority of HTA submissions now include input from more than one PAG (see Figure 4), with an average of two PAGs per submission since 2020 (see Figure 5). 2023 reached an all time high percentage with 12% of patient input submissions received came from more than four PAGs (see Figure 6). 

These collaborations allow PAGs to pool resources, share insights, and present a united front when advocating for patient needs. By aligning their perspectives, PAGs can strengthen their case for particular drugs or treatments, which is particularly valuable in complex or contentious cases.

Figure 4

Figure 5

Figure 6

Notable PAG Contributors

The PAGs with the most submissions, such as the GI Society, Canadian Skin Patient Alliance, and Canadian Organization for Rare Disorders, also stand out as the strongest collaborators and contributors across the most health indications (Figure 7). On the other hand, organizations like the Kidney Foundation of Canada and Canadian Cancer Survivor Network rank high in collaboration but have fewer overall submissions. Contributions from non-Canadian PAGs, mainly from the United States, have steadily increased since 2018, reaching a total of 19 groups by the end of 2023.

Important Patient Engagement Considerations For Pharma

1. Engage Early: If PAGs are learning about a new therapy right before an HTA submission, it’s too late. Involving PAGs earlier—during clinical trials or in collecting real-world evidence—leads to better-informed patient input. Early engagement equips PAGs to provide more relevant, well-rounded contributions when it’s time for the submission.
   
   
2. Build HTA Expertise: With many PAGs contributing to HTA for the first time, building expertise is crucial. Collecting robust patient input is a skill that takes time to develop. Pharma companies can support this by offering educational resources and capacity-building initiatives to ensure PAGs feel confident navigating the HTA process.
   
   
3. Promote Collaboration: Increasingly, HTA submissions involve collaboration between multiple PAGs, including international groups. Pharma can identify PAGs that aren’t yet collaborating and foster partnerships, particularly in areas where fewer patient groups are active. Supporting these collaborations strengthens the overall quality of the submission and encourages diverse patient voice contributions.
   
   

Conclusion

The role of PAGs in Canada's HTA process has grown dramatically over the last decade, with more organizations getting involved, collaborations increasing, and patient input becoming a standard part of the submission process. For pharmaceutical companies, engaging PAGs early in the drug development is essential to ensure well-rounded patient input and more informed submissions, ultimately improving access to new therapies. With only 15% of PAGs currently contributing to HTA submissions, there is an opportunity for a broader range of voices to shape future decisions, especially from communities that have yet to engage with the process. 

For pharma companies with drugs coming to Canada, becoming an expert in the PAG landscape is crucial. With tools like Zebricks, you can gain complete and up-to-date visibility into this ever-evolving space. Identify PAGs with HTA expertise, spot potential collaborators for future submissions, and discover emerging groups that could be key players in your next submission. Zebricks helps you stay ahead and build stronger, patient-centric strategies. 

Speak with our expert Anne-Marie to learn more and brainstorm new ways of approaching patient engagement 

Written by Anne-Marie Bisson