Participant Recruitment Letter

Dear potential participant, 

We are inviting you to participate in our study called Supporting Complex Cancer Patients with Multimorbidity Navigate Efficiently Between Health and Cancer Care Systems. You are being asked to participate in this study because you had cancer and are willing to discuss what it was like for you when you accessed cancer care and other health care services. Please take time to make your decision. Ask questions about anything you don’t understand.

Purpose

The Lakehead University Health Sciences and Psychology researchers Drs Anna Koné and Deborah Scharf are hoping to answer the question: How can we use patients’ experiences to make the cancer care and general health care systems easier for patients to use?

What is requested of me as a participant?

If you consent to participate, you will be asked to:
1. Complete a brief questionnaire (10 minutes) about:
● Basic information about yourself
● Where you have received most of your cancer care and other health care services
● Whether you have other chronic conditions
● The travel involved in accessing your medical appointments
● The accessibility of health care services
● Your quality of life

2. Take part in a small group discussion (focus group). A focus group is a discussion group. We expect between 4 – 8 people will attend, and that the length of the discussion will be approximately 2 hours, including the 10-minute questionnaire. In the group, we will ask you questions about:
● What kinds of cancer care services you needed and used
● What kinds of other health care services you needed and used
● What was it like when you tried to access cancer care?
● What was it like when you also needed to access other health care services?
● What were challenges to getting all the health care you needed?
● What could help improve patients’ access to care and experience?
● How other conditions impact your cancer care?

3. Disclose whether or not you are willing to be contacted to take part in an additional focus group of a similar format and/or discussion at a later date with up to 10 participants (both patients and providers) to discuss the preliminary findings of this study. Please note that this is optional, and that you may still participate in the previously listed activities without participating in this additional discussion.

What are my rights as a participant?

You are under no obligation to participate. Refusal to participate will have no negative repercussions, and will in no way effect your current or future quality of care, or ability to access healthcare services. If you feel uncomfortable at any time, it is your right to refuse to be in the study, refuse to answer any question, or withdraw from the study at any time. However, please note that data cannot be withdrawn after it is submitted due to its anonymous nature. After submission, the data will no longer be identifiable and as such it will be impossible to remove from the database.

What are the risks and benefits?

The only foreseeable risk associated with this research includes distress resulting from sharing your experiences during what may have been a difficult time in your life. If you feel that you have experienced any form of psychological distress resulting from your participation in this study, Dr. Scharf, a registered clinical and health psychologist with a supervised practice, will be on site at all times and be able to provide informed and appropriate referrals to psychological resources. Additionally, we will have business/referral cards on hand for any participant that wishes to have one. Please see the list provided at the bottom of this section for a variety of crisis lines and help services available to you.

Being in this research study won’t help you directly. The information gained from this study may help improve how health care services are coordinated for patients with cancer and another medical condition. If you complete all parts of the study, you will be eligible to receive $50 in gift cards as compensation for your time. We will also provide subway tokens for those arriving by subway, and for those arriving by vehicle $10 will be provided for parking. A meal will be provided.

● Canadian Mental Health Association Crisis Response Service: Toll-Free: 1-888-269-3100
● ConnexOntario: 1-866-531-2600
● Toronto Distress Centre Help Line: 1-416-408-4357
● Centre for Addiction and Mental Health Emergency Service (Toronto): 1-416-535-8501 (press 2)

How will my confidentiality be maintained?

Keeping your information private is a top priority of our research team. We take several steps to keep all your information private and secure, including:
● You will not put your name on any surveys. All surveys will be labeled with numbers instead. All of the written information you give us about yourself will be kept private and will not be linked to your name.
● When you agree to take part in a group discussion (focus group), we ask that you share only your first name with other members. We ask all the focus group participants to keep private the information that they hear in the group. However, we cannot promise that other members of the group will keep your information private. For that reason, you do not have to share any information that you don’t want others to know.
● We will audio-record the group discussions and then have what was said transcribed (written-down). We will not record names or any other identifying information in our notes.
● When we share the results of our research, we will only describe the results of this study in a group format (e.g., 36 adults took part in our study and 15 of them found it hard to manage their medical care). You will never be singled out or identified in any way.
● All data provided will be securely stored at Lakehead University for a minimum of 5 years following the completion of the project.

What will my data be used for?

Preliminary themes emerging from the patient data will be shared with healthcare providers during the provider focus groups in order to facilitate discussion. These themes will not include any identifiable personal data from any individual participant. Specific findings will be presented in group format (e.g., 36 adults took part in our study and 15 of them found it hard to manage their medical care), and some key comments from the focus group sessions may be quoted. These comments will in no way be linked to you, and will not compromise your anonymity in any way. Additionally, we will present the findings from this research at academic conferences and in academic journals. We will not identify any individual participant in the study. The data that we collect will be kept anonymous and confidential.

How can I receive a copy of the research results?

When we have finished the project, you can learn about the study results, by email, if you like. On the consent form, there will be a space to record your email address if you wish to receive a copy of the results. We will forward the results to you as soon as they become available. To inquire about the status or results of the study, please email Dr. Anna Koné at akone@lakeheadu.ca.

What if I want to withdraw from the study?

You are free to withdraw from the study at any time. However, please note that data cannot be withdrawn after it is submitted due to its anonymous nature. After submission, the data will no longer be identifiable and as such it will be impossible to remove from the database.

Researcher Contact Information

If you would like to enroll in this study please contact us at cancerexp.study@lakeheadu.ca or 647 323 8648.

If you are a participant and have any questions about the study or wish to receive a copy of the results please email Dr. Anna Koné at akone@lakeheadu.ca or Dr. Deborah Scharf at dscharf1@lakeheadu.ca.

Research Ethics Board review and approval

This research study has been reviewed and approved by the Lakehead University Research Ethics Board. If you have any questions related to the ethics of the research and would like to speak to someone outside of the research team, please contact Sue Wright at the Research Ethics Board at 807-343-8283 or research@lakeheadu.ca.

Thank you!