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The Role of Patient Input for Oncology Drug Review – An Interview with CEO of the Canadian Cancer Action Network

Marjorie Morrison - Canadian Cancer Action NetworkIn this interview, Marjorie Morrison, CEO of the Canadian Cancer Action Network, talks about the important role patient advocacy groups are playing in today’s complex drug approval process and how the new Patient Health Technology Assessment Navigator is helping to shape the country’s drug review system.

Click here to listen to the podcast.

The CCAN is an umbrella organization representing the views and interests of the patient community. Through partnerships, resource sharing, and knowledge transfer, its role is to ensure that the work underway moves forward in unison to help accelerate the national cancer control strategy, avoid duplication and advance shared areas of interest to patients.

What roles do patient advocacy groups play in today’s complex drug approval process?

Opportunities for patient advocacy groups to be fully engaged in Canada’s drug approval process has improved significantly over the years. Patient input is helping to further inform and even shape our health technology assessment systems. In Canada, with independent healthcare authorities responsible for jurisdictional cancer drug funding decisions, the Pan-Canadian Oncology Drug Review, or pCODR, is a program of the Canadian Agency for Drugs and Technologies in Health or CADTH. They provide recommendations to help support or guide those drug funding decisions.

A key element of the pCODR framework is the integration and consideration of patient input at key points. These are captured in patient evidence submissions for the pCODR Expert Review Committee. That committee carefully considers patient input, as they also focus, of course, on clinical evidence and the cost effectiveness of cancer drugs. So the process of engagement ensures that alignment with patient values is actually given equal consideration alongside those overall clinical benefits, the feasibility and those cost factors.

As an umbrella organization, what role has your organization played and continues to play in Canada’s drug approval process?

Health technology assessment is actually a key area of focus for many patient advocacy groups in Canada and certainly remains a key priority for our organization. So dating back to 2009, when we co-convened three national cancer drug access symposia, the outputs from those events resulted in the implementation of a national CCAN drug review working group, as well as a multi-stakeholder working group on drug access. For the past several years, we’ve actually been working in close collaboration with pCODR to expand our shared patient engagement collaboration project. And this unique partnership has resulted in a number of exciting Canadian first initiatives.

Some of those actually include the co-development with pCODR of a guide for patient advocacy groups called the patient health technology assessment navigator that was modeled after the National Institute for Health and Care Excellence and was the first live resources to assist patient advocacy groups to navigate that pCODR process. The production of a series of informative slide decks is actually underway, and we have that set for release in June.

We’ve also been focused on building an international stakeholder file for the organization. In 2014, we presented an abstract at the Union for International Cancer Control, at the World Cancer Congress in Australia. And during that opportunity, we highlighted how patient engagement actually does inform our unique Canadian Heath Technology Assessment system. And we also co-moderated the Regional Meeting of the Americas with a very specific focus on civil society engagement and how best to integrate national strategies, models and best practices to further advance collaborative action.

Clinical trials are crucial for drug development, and yet only 1-5% of cancer patients participate in clinical trials. How do Canadian patients and their caregivers tend to view clinical trials?

Overall, I do believe there is a growing awareness and certainly an interest in clinical trials from cancer patients in Canada. More specifically, the interest seems to be how they can provide patients with the opportunity to access innovative agents and options they might not otherwise be able to.  I think streamlining access to information about clinical trials, supported by enhanced communication and engagement with primary healthcare team members, really means that cancer patients are proactively exploring and definitely advocating for their own treatment plan or options.

In terms of patient enrolment, and perhaps from a system perspective, patients in larger urban areas benefit from a centralized provision of care approach. However, patients residing in rural or remote areas of the country often express concern over accessibility issues, particularly around actual access or transportation, practical financial concerns such as travel cost for participation, or even anxiety over time off work, which are factors that can influence how participation is viewed. Family caregivers play such an active and supportive role in helping their loved ones reach decisions that I think those practical concerns can definitely have an impact on their decision making process.

In terms of our health technology assessment system, what can be done in Canada to further enhance patient advocacy participation?

While patient advocacy groups who have an interest in the outcomes are engaged in health technology assessment in Canada, the fact remains that so many of these organizations operate with limited funding and resources at their disposal. In many cases, the responsibility of actually gathering the patient input from their constituency and completing the patient submission, falls to a very small core group.

It’s not uncommon for dedicated volunteers to be working with a single staff member for the information gathering and submission process to pCODR. To enhance patient advocacy participation, Canada needs to recognize and commit to providing a pan-Canadian support system to the patient advocacy groups—something to help them navigate that drug review process. Canadian patients need those continued resources to draw from. For example, a dedicated patient HTA navigator who can act as a live resource or be a point person for inquiries—providing some clarification specific to timelines, to content expectations, schedules and even patient input collection.

In Canada, patient advocacy groups are either supporting one another by sharing those best practices, or relying on materials that are developed to help guide them through the complex process. If the focus is really on improving the overall quality of patient evidence submissions, which ultimately help determine the recommendations and guide drug funding outcomes, then sustainability of resources for the patient advocacy community  is quite critical moving forward.

If we can can invest in the patient community and provide them with the resources they need in order to be successful, we’re likely to benefit by seeing enhanced patient advocacy engagement emerge as a result.

What are your thoughts on initiatives like the Reverse Feasibility Program that attract novel cancer trials to Canada and provide immediate access to drugs patients want, and how does this contribute to the Canadian oncology care community from a patient perspective?

The patient advocacy community and the oncology care community naturally share a mutual interest in improving patient outcomes. That is why the commitment to working collaboratively in the best interests of the patient and streamlining the process where feasible, is so important. Collectively we want to see acceleration in terms of timely patient access. We want to see more clinical trials being attracted to Canada, and of course to realize optimum patient recruitment.

The Reverse Feasibility Program is one example of a collaborative approach to oncology trials by providing that tool to support patient access and to promote recruitment. It’s encouraging from a patient advocacy perspective to see Reverse Feasibility champions focus on expediting the start-up process and recruiting patients for those innovative trials in Canada. Other initiatives, like the implementation of the Canadian Cancer Clinical Trials Network, that focus specifically on improving the efficiency and the quality of academic clinical trial activity in Canada, are also valuable when considering how we can work collaboratively to significantly and measurably improve patient outcomes for Canadians.

In your view, what measures can biotech and pharma sponsors take, either in collaboration or independently, to further improve drug development, education and access in Canada?

Without question, bio-pharmaceutical sponsors are an important stakeholder group. In terms of moving forward, there are opportunities for diverse stakeholders to explore. Opportunities that allow stakeholders to work more collaboratively, particularly when the shared interest is centered on the patient. For example, the timelines for a patient submission to pCODR are restrictive. Many people do not realize that patient advocacy groups receive one month advance notification from pCODR, followed by only ten business days upon receipt of drug submission by the manufacturer. Those are restrictive timelines. It stands to reason that patient advocacy groups would benefit greatly if they received information from pharmaceutical stakeholders about anticipated drug products or indications coming to the Canadian market. This would allow additional time for the patient community to prepare for the patient health technology assessment submissions. And as a result, I believe would improve the quality of those patient submissions.

If you are an oncology drug developer and think you may want to expand your trial to Canada then now would be an excellent time to schedule a discussion.

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P.S. To learn more about the Reverse Feasibility Program visit

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