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Past Meetings

April 25, 2018

Empowerment for Life: Partnering with patient organizations for better healthcare outcomes

Christine Montgrain, National Manager, Community Relations at Abbvie opened the meeting by discussing the objectives of the presentations:

  • Understand the role of patient associations and their governance models
  • Learn how they make a difference in patients’ health outcomes
  • Gain a deeper understanding of how industry can partner with patient associations

She then introduced the guest speakers:

  • Ken Gagnon
    Director, stakeholder Relations at the Arthritis Society
  • Laurence Mersilian
    General director of CAPAHC
  • Martine Elias
    Director of access, advocacy and community Relations at Myeloma Canada

Patient associations governance models: Ken Gagnon

The Arthritis Society has recently undergone many changes regarding its orientation and mission prioritization. These changes have resulted in a new logo as well as a new vision for the association: " To live in a world where people are free from the devastating effects that arthritis has on lives."

Mr. Gagnon then discussed the different types of governance models that exist in patient associations. Distinctions between these models can bring important nuances in how pharmaceutical companies can partner with them. The different governance models are:

  • Unique: One head office with a single team
  • Unified model: an organization with several regional offices working under the same board of directors.
  • Federated model: several organizations with independent boards working under one umbrella
  • Coalition: an alliance of different organizations for certain specific issues.

Patient associations also have a great diversity within their members and this allows to regroup different strengths. In fact, patients are an excellent resource when it comes to understanding the needs and issues affecting people with the disease. On the other hand, employees can bring an expertise in certain areas such as disease and treatments knowledge, political issues, advocacy, clinical research, etc.

Mr. Gagnon finally emphasized on the fact that priorities may vary among different associations as well as the audience they target. It is important to consider these differences in order to have an optimal collaboration.

The challenges of patient associations: Laurence Mersilian

CAPAHC is a provincial community-based organization offering several patient support services including an information and listening line, support groups and support programs for patients in great need. Ms. Mersilian highlighted the importance of their work in knowledge transfer to professionals facing customers who are affected or at risk of being affected by hepatitis C. To this end, the association offers several symposiums and training sessions helping these professionals.

In addition to the offered patient support services, Ms. Mersilian thinks that the association has an important role to play in the drug market and this requires a good understanding of the system as well as the government strategies or the lack of government strategies. Several efforts are being put in place to denounce certain patient policies and attempt to make a change in these. CAPAHC acts in particular through consultations between different associations, patient mobilization, meetings with the provincial elected officials as well as with decision-makers. In addition, the association is also working with INESSS in order to highlight what new treatments can bring to patients. These efforts aim to ensure that all treatment options are available to people living with hepatitis C and to accelerate access to new molecules that fulfill unmet needs. In fact, a new form for drug evaluation made with patients has been put in place and it is necessary to use this path to make the patients' voices heard.

Ms. Mersilian concluded by discussing the agreement that Canada has signed with WHO as part of a global strategy for the elimination of hepatitis C by 2030. To this end, CAPAHC is working with a coalition including 60 national associations as well as various federal elected officials across the country to put in place a national strategy.

Engagement principles: Martine Elias

Myeloma Canada is a national non-profit association dedicated to improving the lives of Canadians living with multiple myeloma. This association created by patients has as a main goal the acceleration of treatment access and it primarily puts efforts in patient education, disease awareness and advocacy. Myeloma Canada is also highly involved in community engagement and clinical research. In fact, the association has a research network that includes several internationally renowned Canadian researchers in 27 research centers in Canada, including 6 that are located in Quebec. The research network aims to develop and implement clinical trials to provide access to more patients across Canada. The network also has a platform that enables the sharing of scientific data and clinical expertise among members to optimize the care of Canadians with multiple myeloma.

Discussion continued on the importance of respecting certain principles in partnerships with pharmaceutical companies. Ms. Elias emphasized that interactions must be in accordance with the laws and regulations that surround them. Also, they should focus on patient benefits and be carried out in a respectful environment while being mutual beneficial for all parties.

Ms. Elias concluded by mentioning some of the remaining challenges to improve treatment access for patients. She emphasized the need to further consider value-based outcomes in drug evaluations. Also, she raised the need for transparency in the negotiations involving the pan-Canadian oncology drug review (pCORD). Finally, she briefly raised the need to eliminate certain bureaucratic elements that could slow down drug access as well as the continual need for real word data.

Question period moderated by Christine Montgrain

Q: Are you ever questioned about your partnership with the pharmaceutical industry?

K. Gagnon: Yes, we are. Therefore, it is very important for the associations to follow defined guidelines in order to maintain their credibility with the patients. This is translated by the use of a neutral vocabulary to not give any influence or give rise to a perception of bias.

Q: Do you believe that submissions from patients / patient associations made to INESSS or pCORD, for example, have an influence on their decision-making?

K Gagnon: No, not at the moment, but there are mechanisms that are currently being put in place by INESSS and we are confident that it will improve in the near future

Q: What means do you use to facilitate access to information regarding ongoing clinical studies for patients?

L. Mersilian: CAPAHC facilitates this access through a patient information line, support groups as well as an online chat service to offer as much information as possible on anything that can be of interest to the patient.

Q: Do you have any tips or suggestions to optimize your collaboration with pharmaceutical companies?

Mr. Elias emphasized the importance of involving patient associations early in the implementation of clinical studies and throughout the development process. Patients perspective is an essential element to consider especially in the choice of the included endpoints.


Hajar Jarine
Freelance Medical Writer
Cell: 438.580.7913


Wednesday, March 17, 2021

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