Amplifying patient voices to shape our Network

Patient Working Group

The MOHCCN Patient Working Group brings together people with cancer patient experiences to participate in the advancement of MOHCCN mandates. This can include people who have had a cancer diagnosis and treatments themselves, and people who have acted as a caregiver for someone with a cancer diagnosis. In either case, the cancer diagnosis must have occurred at least one year ago.

Information for potential participants

What is the Marathon of Hope Cancer Centres Network?

The vision of the Marathon of Hope Cancer Centres Network (MOHCCN) is to bring together leading cancer centres across Canada to collaborate on precision medicine developments to benefit cancer patients and drive innovation. The goal of the Network is to apply advanced technologies such as genomics, high-powered imaging, and artificial intelligence (Al) to solve complex cancer cases. The Canadian healthcare system has real advantages for collecting and sharing health data. A key objective of the MOHCCN is to unite Canadian researchers and close the gap between research in the lab and patient care in the clinic. The creation of such big data resources will allow the necessary evidence to support clinical decisions so that optimal treatments can be chosen for each patient. With the goal to create a unique cohort of 15,000 “goId-standard” cases representative of the diversity of Canadian cancer patients, we will link the genomic profiling with the clinical information available through the centres to provide vital information on health outcomes for patients treated in the ‘real world’.

What is the MOHCCN Patient Working Group?

The MOHCCN Patient Working Group brings together people with cancer patient experiences to participate in the advancement of MOHCCN mandates. This can include people who have had a cancer diagnosis and treatments themselves, and people who have acted as a caregiver for someone with a cancer diagnosis. In either case, the cancer diagnosis must have occurred at least one year ago.

The MOHCCN patient working group includes 10-12 volunteers with diverse membership (i.e. ages, genders, ethnicity, educational experiences).

Meetings of the Patient Working Group will be held virtually every 6 weeks (approximately one to two hours in duration).

Why become a member of the MOHCCN Patient Working Group?

MOHCCN recognizes that patient engagement and partnership play a crucial role in improving healthcare. By joining our Network, you will have the opportunity to help shape the future of precision cancer care in Canada. Patient Working Group members will be working with researchers, physicians, and other healthcare professionals to make positive changes in healthcare for all Canadians.

This engagement will also give the opportunity to share valuable information about living with a cancer diagnosis, treatments and survivorship. If you have an interest in giving back to the community and contributing to positive change in healthcare in Canada, we encourage you to apply!

Learn more about:

  • Precision Medicine
  • Cancer centres

Is this limited to a specific type of cancer?

No, MOHCCN would like to extend an invitation to individuals with diverse cancer experiences.

What is the time commitment?

We ask Patient Working Group members to commit to at least four Working Group meetings with the MOHCCN Patient Working Group (Patient Working Group meetings will be held about once every 6 weeks).

Once or twice per year, MOHCCN will aim to have a day-long hybrid (in-person & virtual) event that will include a workshop with Patient Working Group members.

What kind of tasks will Patient Working Group members be asked to do?

During meetings and workshops, Patient Working Group members may be asked to:

  • Provide feedback on your own healthcare experience, as well as any topics that are brought to discuss
  • Have input on project design and execution
  • Read and comment on documents related to research or patient care
  • Co-develop educational materials

Patient Working Group members will serve on the Patient Working Group and will be expected to attend Working Group meetings (about once every 6 weeks, virtually).

Once or twice per year, MOHCCN will aim to bring researchers and Working Group members together for hybrid (in-person & virtual) meetings and workshops.

Are specific skills required to be a member of the Patient Working Group?

We are looking to recruit individuals from a variety of backgrounds to join our Network. No professional background in health sciences is required. The following skills would be beneficial when joining the Network as a Patient Working Group member:

  • Willing to make a time commitment
  • Good listening skills
  • Respect for other’s opinions and perspectives, even when they don’t match your own beliefs
  • Ability to give helpful feedback
  • Good communication skills
  • Works well in a team
  • Open and able to comfortably discuss healthcare experiences (positive and negative)
  • Passion for improving the healthcare experience
  • Ability to see beyond their own personal experiences

What if I can’t travel/attend in-person events?

Most meetings and workshops are held virtually. In-person attendance will never be mandatory for members of the Patient Working Group.

Patient Working Group: Opportunities for Participation

An invitation to join the patient working group was shared in December 2022.  Interested participants were invited to submit a participation form by January 16, 2023.    

As the membership of the patient working group moves forward and additional patient engagement activities are developed, we invite anyone interested in participating to complete the form to be contacted about MOHCCN patient engagement opportunities.  

Fill out the form!

 

Will there be compensation offered to Patient Working Group members?

Patient Working Group members will be reimbursed for any costs related to attending meetings with the Network.

Do I need to contribute any data to the initiative?

No. Although the cancer centres participating in MOHCCN have projects with patients that are contributing data, there is no requirement for members of the Patient Working Group to contribute their data.

MOHCCN is a pan-Canadian network. As such, it is important to include the voices of patients that represent diversity in Canada, and we encourage all to apply.

Is this opportunity limited to a geographic area?

As a pan-Canadian network, MOHCCN is interested in engaging with Patient Working Group members currently residing in Canada. We particularly encourage candidates from rural communities to apply and aim to get representation from across Canada.

Is this opportunity limited to English speakers?

We encourage candidates who are not native English speakers to join our Network. A working knowledge of English is preferable in order to be able to engage with the research, which is mostly being conducted in English. We do hope to include members who speak other languages as their mother tongue, including French and Indigenous languages. If you require translation services, please let us know so we can work to accommodate your needs.