Frequently Asked Questions – All Other Provinces
A Pan-Canadian Study of Cancer Patients’ Out-of-Pocket Costs (‘P-SAFE STUDY’)
Office of the Chair of HiREB
Telephone: (905) 521-2100 ext. 42013
About the Study
You are invited to take part in this study on out-of-pocket costs and other financial burdens for cancer patients. The P-SAFE Study Team are hoping to learn about your cancer related expenses since your cancer diagnoses and see how these expenses may affect family finances. The costs included in this investigation are: medical costs, non-medical costs (travel, parking, daycare, etc.), and the impact of illness on ability to work. We are also hoping to understand your health insurance purchases and understand if additional insurance purchase would have been helpful in managing these costs.
Research Now, an independent survey agency, is hosting the survey on behalf of P-SAFE Study Team but your cancer centre has invited you to take part.
The lead and co-principal investigators of the P-SAFE Study have experience evaluating cancer patients’ costs. The team has expertise in survey development and analysis, insurance behaviours, supportive care programs and knowledge translation. Clinical leadership provides access to appropriate patients nationally, and most team members have excellent networks in the cancer community, with a strong record of research, student mentorship, and publication.
The Patient Self-Administered Financial Effects (P-SAFE) v7.2 questionnaire has been designed by the Principal investigator and will be used to calculate total out-of-pocket costs (OOPC) for each patient. Financial effects include: patient out-of-pocket cost, patient and caregiver lost income, and inputted travel costs. P-SAFE also includes questions on insurance behaviors including their perceptions, attitudes and motivations. Much of this questionnaire has been through a caregiver and health professional validation process at Toronto’s Sick Kids Hospital.
Research Now is the world’s leading digital data collection company. They offer global primary market research solutions and access to a wide range of healthcare professionals, physicians, patients and caregivers worldwide.
By understanding the relationship between financial expenditures and geography (province of service) the findings from this research will provide new information that may facilitate improvement in patient and family financial burden. Results will inform policy-makers at the provincial and institutional level, and may result in policy changes to mitigate some of these financial issues for patients and their families in the medium to long term.
For this survey, we ask you to think only about the time period after completing cancer treatments such as surgery, chemotherapy, radiation therapy, etc. If you are currently going through cancer treatment for a second cancer, please think about the follow-up care you received after completing cancer treatment for your first cancer.
Taking part is completely voluntary. We hope you will take part and complete the survey as this will give us the best possible picture of patient’s out-of-pocket cost. If you do not wish to take part, you do not have to do anything else. If you have completed previous survey(s) but wish to withdraw from the study, or if you wish to have your name and address removed from any further reminder mailings, I’ll need the following information from you: your PIN from the survey.
Completing the Survey
Answering these questions is completely voluntary. It is entirely your choice what questions you answer. However, we hope you will take part and complete the survey, as this will give us the best possible picture of people’s experiences.
You may ask for help in filling in the questionnaire but it should be completed using your own experience, not the experience of your spouse/friend/other.
The Online Survey
You don’t need a PIN for your first visit. Your unique PIN to complete the survey online is visible on-line after you have completed the visit 1 survey. It will be required for visit 2 and visit 3.
Yes, you can take a break when completing the online survey. When you are completing the survey online, your responses are saved automatically. You can close the browser window containing the survey whenever you like – your responses will be saved. However, once you exit you cannot return to the survey again if it was not fully completed. Please note: though your responses save automatically, we won’t actually look at the responses until you complete your session and log-out.
To access the online survey you have to type [https://survey-na.researchnow.com/wix5/p1197534529.aspx] into the browser. This should take you to a page that asks for your visit number and if completing visit 2 or 3 will ask for your PIN. Your unique PIN to complete the survey online is provided to you after your first visit and will be e-mailed to you a week before visit 2 and visit 3.
Thank you so much for taking part in the survey.
In provinces that do not require consent form return, if you’ve already completed the survey then there’s no need to do anything else.
In provinces that require consent form return, please go ahead and send us your signed consent form. We won’t be able to look at your responses unless we have your explicit, written consent to do so.
Confidentiality and Data Protection
The P-SAFE Study Team does have access to data about your cancer treatments and may use it in combination with your survey responses for analysis. No one else involved in this study has access to any information about you; not your name, address or anything else about your health.
The P-SAFE Study Team will not have access to any of your personal information other than what you provide in the survey responses. On the survey, The P-SAFE Study Team asks socio-demographic questions, such as age, gender, education, language, household size, and income for the purposes of understanding the population being surveyed and for analysis to be able to differentiate between the responses of one group and another. For example, The P-SAFE Study Team will be able to analyse the data by different age groups to determine if responses between these groups are different in any way. Demographic data is very important to the research. We encourage you to complete these questions.
Your doctor/nurse practitioner/oncologist is not involved in the survey and will not be made aware of your participation in the study. There is no way to link your responses to any specific health care provider. Choosing to participate or declining to answer survey questions will have no connection to your specific care team and will not influence your cancer care in any way.
Your individual answers will not be seen by anyone from your health team. No one outside of P-SAFE Study Team will know who has participated in this study. Choosing to participate or not participate in this study or declining to answer survey questions will not in any way affect the care you receive.
No, identifiable individual answers will not be seen by anyone other than the P-SAFE Study Team. You are participating in this study confidentially. Only anonymous statistical results will be provided to recruiting sites. The study team will not use your name or any information that would allow you to be identified. You will be assigned a unique study ID. No one but the Principal Investigator, the research coordinator and student investigators will know whether you were in the study unless you choose to tell them.
The Information/data you provide will be coded and kept in a locked cabinet where only the Principal Investigator and the study team will have access to it. A master log with identifying information will be kept and stored separately from the data. Study data will be kept on a computer will be protected by a password. No information that shows your identity will be allowed to leave this institution. Once the study has been completed, the data will be kept at the McMaster University in Burlington under the Principal Investigator’s responsibility for a period of 10 years.
Yes, your provincial cancer agency submitted an application for the P-SAFE Study to its local Research Ethics Board and/or privacy officers for ethical review and obtained full approval by the Board and/or Privacy on [date]. The study was not allowed to proceed without this approval. The ethical review helped to ensure that participants approached to potentially participate in the P-SAFE Study are informed of any risks associated with the study and that participants are free to decide if participation is right for them. If you have any questions about your rights as a study participant, please call your local ethics board at your centre or the Primary Investigator ethics board at McMaster in Hamilton.