Cancer Research: Information from a Patient / Caregiver Perspective

Research with Respect - Information, Support & Advocacy for Phase I Oncology Clinical Trial Volunteers
Cancer Research Information for Terminally-Ill Volunteers



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Team Roles

The 'Care Team,' first and foremost, includes you and your immediate family and friends who are playing a part in your care. You, as the patient, or with your advocate, can decide how involved you want to be in the planning and provision of your care. The following tables of Team Roles are intended to provide clarification and assist you in your advocacy for timely, efficient and quality care.

Click here for a printable, one-page PDF version of this information

Research Care Team (Clinical Trials Unit)

Information provided by the BC Cancer Agency

Principal Investigator Research Oncologist Clinical Trials Nurse Coordinator
This may be the Chief Investigator, or where the research involves more than one site, the Principal Investigator (PI) and is the person at each site responsible for day to day running of the study. The PI has responsibility for the patients he/she recruited for the study. You should expect access to this person if the Nurse Coordinator is unable to answer your concerns.

 

A Physician specifically trained in cancer treatment who has a particular interest in clinical research. May be the Principal Investigator, depending on the study sample size, or may be one of two or more Research Oncologists involved with the study. Acts as the navigator and is the primary advocate for the patient, prior and throughout their participation in a research study. They also educate the patient and family about their disease process, study-related procedures, alternative choices and are involved in the informed consent process. Has a primary role in the safety and well-being of the patient. Reports to the Clinical Trials Unit Manager.
Lab Technician Pharmacist Clinical Trials Data Coordinator
Conduct laboratory tests that aid in the prevention, detection, diagnosis, treatment and research of diseases.

 

A person trained to prepare and distribute medicines and to give information to colleagues, patients and families about them. In clinical trials this is study specific.

 

The CTDC participates in the coordination of clinical trials from the protocol review and approval stage through to activation, trial closure and follow-up. Reports to the Clinical Trials Unit Manager. The CTDC has principal responsibility for clinical trials data management, including designing data capture tools, capturing and recording clinical trials data, monitoring and promoting the quality and integrity of data, and preparing summary reports. Data management is performed in accordance with trial protocol, procedures, guidelines and professional standards of practice.
Counselor
   
We do not have a counselor specific to clinical trials. We have patient and family counseling services for all patients    

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Personal Care Team

Information provided by the Victoria Hospice Society

Family Physician Home and
Community Care Nurses
Case Manager
Primary medical person. Responds to your calls re any medical concerns. Visit you at home or refer you to other community care-givers. Available for family support or information. Coordinate care in home. Provide nursing care, teach patient care, arrange for supplies and home aids, provide support. Determine, with you, need and frequency of visits. Available 8:30am-11:00pm every day.


Assist in application for services not provided by Home Care. Eg. Home Support Agency
Home Support Agency Allied Health Personnel (Nutritionist, Rehab) Hospice Staff (Counselor, Volunteers)
Provide Community Health Workers for non-health care tasks Eg. bathing, respite They do not do house-cleaning, pet care etc. You must hire privately for these types of tasks.

Available after discussion with the Nurse who will arrange a home visit if necessary. Hospice is a program you can choose to use. It is oriented towards comfort rather than care or cure.

Click here for a printable, one-page PDF version of this information

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