Many Canadian provinces have government branches responsible for Cancer Care. In my home province of Nova Scotia, I have had my efforts at advocacy supported by the Patient Engagement Coordinator. In this guest blog, Leslie Hill describes her role. If you are a Canadian interested in advocacy, contacting the Patient Engagement Coordinator in your province could be your first step to a rewarding adventure.
by Leslie Hill, CCNS Patient Engagement Coordinator
More than ever patients are becoming involved in their cancer care.
They are not only involved in their individual healthcare decisions but also in the healthcare system improvements! They are being asked to help identify research questions and interpret research findings, develop patient education materials, participate in projects to improve quality of care and safety, develop standards and helping in a variety of other projects which have traditionally been the sole domain of healthcare professionals. The opportunities to provide input includes: responding to surveys, attending focus groups or becoming a member of a committee.
On the flip side, patients are seeking these kinds of opportunities. They might want to give back to a system that has given them amazing care during a difficult time in their lives, or they may have had a challenging experience that they want to address for others.
Healthcare providers and patients collaborate in numerous ways to improve the healthcare system. As Cancer Care Nova Scotia’s (CCNS) Patient Engagement Coordinator, I play a key role in connecting and matching patient expertise and interest with a health provider’s need to improve the cancer system.In essence, my role is to connect the dots – the health care teams who want the patient perspective on their project and the patients wanting to give their perspective. It’s not always easy to make the connection all the time, but my job is to make the link as easy as possible for everyone.
I do this by sharing opportunities for patient involvement through CCNS’s Cancer Patient Family Network (CPFN). This is a virtual network of patients and families who are interested in system change. People join the network to receive regular e-mails about how they can help improve the cancer system and they can choose to participate in something that is relevant or interesting to them.
To learn more about the Cancer Patient Family Network please visit: www.cancercare.ns.ca/CPFN
It is truly incredible to witness the unique perspective patients bring when they participate as patient representatives on committees and working groups. (We call them Public Advisors; these people could be patients, family or caregivers). They selflessly volunteer their time to come to committee meetings, share their perspective and be part of the team.
We have had patients and families volunteer for many projects such as:
- Developing and implementing cancer standards and guidelines
- Developing healthy public policies
- Developing innovative programs, like the colorectal cancer screening program
- Evaluating aspects of the cancer system
- Developing education materials for patients and health professionals
- Analyzing cancer trends
Having worked in healthcare for over 25 years, I believe the patient and family perspective is key to making the cancer system better. I also know that patients may be hesitant to join a committee mostly made up of health providers. Health providers who have never worked this way with patients may also be anxious. My role is to make patients and health providers feel at ease. I prepare and educate Public Advisors to become committee members and I also orient healthcare teams to have patients on their committees. I follow up with Public Advisors and team members to learn of their successes and challenges so that I can make necessary improvements the next time. However, I usually only see successes.
“We saw the draft recommendations that resulted from our participation. We saw that our voices were heard and respected” – quote from a CCNS Public Advisor on a CCNS working group
“It has been wonderful to hear firsthand the experiences of the Public Advisors, it brings a different perspective and helps us to remains focused on the goals of our work”- quote from a CCNS Advisory Committee member.
We’ve learned many lessons along the way to help ensure our successes. These include: interviewing patients and families to determine if they are physically and emotionally ready to take on this work and share their stories, providing solid orientation sessions so people feel prepared for committee work and having two Public Advisors on each committee for mutual support and camaraderie.
We also have additional supports for public advisors, which include: a social worker to call in the case of distress, a policy to deal with conflict, and me as the patient engagement coordinator, who is available to provide ongoing support on an as needed basis.
The graphic below shows a number of the CCNS committees or working groups which have Public Advisors around the table. And we always have new projects requiring the patient and family perspective.
I find my role incredibly rewarding. Every day I get to witness patients and health providers coming together to make REAL improvements. I see, first-hand, how working together helps build mutual respect and trust. It opens doors for communication. It makes the system better.
And…it makes people feel good. How rewarding is that!
Cancer Care Nova Scotia is one of the provincial programs of the Department of Health and Wellness of Nova Scotia. Cancer Care Nova Scotia was established in 1998 to help reduce the burden of cancer on individuals, families and the health care system through prevention, screening, education and research. CCNS has been committed to involving patients and families in their work for many years, and the idea that patients are partners was documented in the planning of CCNS in 1996.
“Cancer Care Nova Scotia will involve caregivers, both professional and volunteer, cancer patients, survivors and family members, agencies, community groups, facilities, planners and researchers in the planning, standard setting and evaluation of cancer care.” Cancer Action Committee May 1996
If you would like more information about Cancer Care Nova Scotia, the Cancer Patient Family Network and many of the projects which involve patients and families, please visit our website www.cancercare.ns.ca