Support and Care for Patients with Prolonged and Incurable Cancer
Project Description
New treatments in cancer care can mean more people are now living for years with an incurable cancer diagnosis. Despite this growing population of patients, we do not know enough about how to support those with prolonged, incurable, chronic, or metastatic/advanced cancer. Living with cancer as an incurable disease can present unique issues related to finances, work, symptom management, and quality of life for patients, their families and their communities. However, there are currently no specific “care pathways” or services tailored to this patient population.
This project aims to better understand this group of patients and their unique care needs and to examine current gaps in health care services to inform a new model of care that addresses the supportive care needs of this patient population.
Project Objectives
- Identify physical and psychosocial symptoms, needs, service barriers, gaps in care, and priorities for this patient population and how they can best be managed.
- Determine how care pathways for patients with prolonged incurable cancer are currently organized and how they can be optimized.
- Determine what the roles are for different healthcare providers, including primary care (e.g., general practitioner), in the care of and care coordination for patients with prolonged incurable cancer.
Intended Outcome
The overarching aim of this project is to develop a new model of care to address the supportive care needs of people living with prolonged, incurable cancer. The intent is to co-develop this model of care via ongoing involvement from patients, their families and communities.
How can you get involved?
- Register to get project updates and attend virtual townhalls (Follow project or sign up)
- Join the project team as a Patient Family Advisor (see Volunteer and Paid Roles)
- Become a community liaison leader to help us co-design focus groups (see Volunteer and Paid Roles)
- Register for focus groups in your community to share your perspective
- Fill out surveys to help us understand the needs of patients and families
Follow this project page to stay up to date!
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10 responsesComplete Form
Thank you for your interest to join this project as a Patient Family Advisor, sometimes also referred to as patient partners.To learn more about becoming a Patient Family Advisor with this project, you can read this document: Patient Family Advisor Position Description
Our health care system learns from your experience.
Official Project Title: Patient care navigation for people living with prolonged incurable cancer.
Project description: The Nova Scotia Health Cancer Care Program is working on a project focused on people who are living with prolonged, chronic, or advanced, incurable cancer while receiving treatments (often targeted treatments). These patients face unique barriers to care/gaps in care associated with living with an incurable disease, but due to their prolonged survival, they also face issues that may traditionally be related to survivorship.
We are looking to partner with people with lived experience of prolonged incurable cancer to be a patient partner on this project. The role of the patient partner as part of the project team is to ensure that patient-identified priorities are sufficiently considered and addressed in the process of the project.
This is a paid position compensated with an annual honorarium of $400.
The project is slated to start Autumn 2024 and the first phase of the project will take about one year. The requested level of involvement in the project entails participation in team meetings, reviewing feedback and helping us identify priorities. (total time commitment approx. 1-2 hours a month).
Nova Scotia Health has made a commitment to involve patients and families in this project.
You can fill in this form to express your interest to join the project team.
No special knowledge or skills are needed. The ideal person is someone who can use their experience as a patient or family/caregiver to help shape the care we provide.
You might like this role if:
- You can talk about your experience to help us make improvements.
- You can share honest points of view in a respectful way.
- You are interested to work with a team made of health care providers, researchers and patients and families.
- You have time to attend virtual/online meetings once a month.
Those selected will need to:
- Be a person with personal or family/caregiver experience with a prolonged or incurable cancer.
- Be 18 years of age or older.
- Sign a confidentiality agreement with Nova Scotia Health.
- Declare any potential conflicts of interest.
- Be able to commit to attend meetings typically during business hours.
Once you fill out the form below, someone will reach out to you about next steps!
Please Note: Current NS Health employees, Hospital Foundation members, Community Health Board members, and elected officials are not eligible to apply. NS Health is committed to being a workforce that is free of discrimination, values diversity and is representative, at all job levels, of the people we serve. Those selected to become a Patient Family Advisor on the committee will be paid an annual honorarium.
Please contact Dr. Julia Kaal if you would like to learn more and/or are interested in being part of the project.
Julia Kaal, PhD
Embedded Scientist
Cancer Care Program
Nova Scotia Health
Phone: (902) 483-4261
Email: julia.kaal@nshealth.ca
KJuliaKaal@dal.ca
Pronouns: she/her
Volunteer and Paid Roles associated with this project
The Project Team
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JK
Phone 902-483-4261 Email julia.kaal@nshealth.ca -
JT
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AC
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Email leslie.hill@nshealth.ca -
JF