Frequently Asked Questions
- What are the benefits of blood collection to the Study?
- Why am I being asked to give blood?
- How will I be invited to provide a blood sample?
- What will be done with my blood sample?
- Will I get the blood test results?
- How much blood will be taken?
- Who will collect my blood?
- Are there any risks associated with the blood collection?
- How will my privacy be protected?
- What if I do not wish to take part in the blood collection process?
- Who has access to the Ontario Health Study data?
- Who will see the blood sample results in addition to myself?
- When will I receive the blood test results?
- Incidental research findings
- What if my blood test reveals a medical condition?
- Will the samples collected by the Ontario Health Study be used for commercial purposes?
- Where do I go to get my blood collected?
- How do I book my LifeLabs appointment?
- Will I be paid for providing my blood sample to the Study?
- How do I make an appointment?
- Who is eligible to give blood?
- Why do I have to consent online to blood collection?
- Why do I have to fill out another questionnaire?
- How long does the screening questionnaire for blood collection take?
- What questions will I be asked in the screening questionnaire?
- How long does the blood collection appointment take?
- When do I have to make a blood collection appointment?
- What if I can’t attend my appointment and I need to reschedule for a later date?
- What do I need to bring with me to my appointment?
- Do I need to fast prior to providing a blood sample?
- Why do I need to print the blood collection requisition form? What if I can’t print the form or do not have access to a printer?
- How do I prepare for my appointment?
- I wanted to give blood but was informed by the OHS that it was not safe for me to provide a blood sample. Will I have another opportunity to provide my blood?
- Will you link my data to other health data already collected about me?
- What happens if I decide to stop taking part in the Study after my blood has been collected?
- Are all LifeLabs locations participating in the Blood Collection Program?
- Is the Blood Collection Program available in French?
- What questions will I be asked upon blood collection?
- Do I need to bring photo identification to my appointment?
- How can I take part in the Study if I am unable to provide a blood sample?
- In combination with the information you provided on your initial health questionnaire, your blood sample will help researchers better understand the factors that influence health and quality of life. Blood samples may be used in health research to answer questions about hormones, nutrients, vitamins, chemicals, metals and genetic factors. Ultimately, all of the samples that are collected may help to improve the prevention, and diagnosis of chronic diseases such as cancer, heart disease, diabetes, asthma, Alzheimer’s, and depression.
- Participation in this vital second phase of the Study may allow you to learn something that you did not know about your health through the blood analysis report that each participant who provides a sample will receive.
- Once you enroll in the Ontario Health Study and complete the initial online questionnaire, you may be asked to participate in this important initiative, which involves the collection of a small blood sample. Your blood sample will provide additional information that will help health researchers to better understand what affects health and quality of life.
- Participation in this phase is entirely voluntary and you can continue to take part in the Ontario Health Study should you choose not to provide a blood sample. You may also provide a sample when it is convenient for you.
- The blood samples collected by the Ontario Health Study are for research purposes only. The Study’s blood measurements are not diagnostic and do not replace a visit to your doctor or health-care professional.
- Those who are asked to provide a blood sample will receive reminders via email and a possible telephone call from an Ontario Health Study staff member.
- You may be asked to indicate your interest in providing a blood sample to the Ontario Health Study the next time you log into your Ontario Health Study home page. At the moment, we are inviting participants to take part in stages based on age and other demographic factors. Once you have registered your interest, you will be invited when you meet the current invitation criteria.
- Most of your blood sample will be frozen so that researchers can use some of it in the future. Your samples will be stored until they are no longer needed for research purposes, at which point a decision will be made about what to do with your remaining samples. Some of the studies that may be done with your sample will involve looking at blood markers, called biomarkers, of disease. By providing a blood sample, it will also be possible for researchers to look at your DNA and other parts of your blood. All samples from participants will be kept in small plastic tubes with an identification code. No personal information will be kept on the tubes that are stored for future research. Your urine sample will be divided up and frozen for future research use, and could be used to look at kidney function, nutritional and dietary information, environmental exposures and other things. All of your samples will be stored in secure freezers.
- Current technology, such as ‘next-generation’ sequencing, has improved our ability to study the genetic basis of diseases and conditions because it is now possible to find disease-causing genes with a relatively small number of participants. We anticipate that researchers who access your blood sample in the future might want to sequence your DNA. DNA is long lasting and can be stored for an indefinite period of time meaning it could be tested using new methods in the future. Unless researchers uncover something that could be threatening to you or reveals a serious condition that can be treated or prevented, you will not receive the results of any of the future analyses of your blood.
- Some of your blood will be used for immediate blood analysis. These analyses include:
Complete Blood Count: The cells in your blood will be analyzed to look for anemia, infection and other diseases. This test gives a general indication of your health.
Glycosylated Hemoglobin Analysis: This test measures the long-term level of sugar in your blood, and is used to detect and monitor cases of diabetes. This test will help health researchers study diabetes, heart disease and obesity.
- Some of the results of immediate blood analysis will be shared with you. These will be available on your personal home page after your blood had been analyzed. Please click here to sign into your Ontario Health Study home page.
- Generally, it takes around 10 days for this information to be posted to your home page. When the results are available, you will receive an email to notify you of this.
- These data will be de-identified and stored on secure servers at the Ontario Health Study.
- Access to the data and samples is governed by strict guidelines that protect the confidentiality of participants.
- All health researchers using data from the Study must receive approval from a Research Ethics Board or similar committee before access is given.
- No information about you will be given to your employer, family members or commercial entities such as insurance companies.
- Samples are processed at repositories located in Canada. All samples will be given a unique code and no personal information will be kept on tubes that store blood samples.
Yes, all participants who have participated in the blood collection initiative will receive the results of the tests completed immediately after their blood is collected. Under normal circumstances, your individual results will not be communicated to you if your samples are included in future research.
If you decide to provide a blood sample, 5 tubes (approximately 35 mL, 2.4 tablespoons) of blood will be taken from a vein in your arm.
- LifeLabs® Medical Laboratory Services will be collecting blood samples from OHS participants in partnership with the Ontario Health Study.
- OHS participants who are asked to give a blood sample will be able to visit a local LifeLabs® Patient Service Centre to provide a blood sample to the OHS. To find a LifeLabs® Patient Services Centre near you, click on the following link: http://www.lifelabs.com/Lifelabs_ON/locations/default.aspx.
There are no major risks associated with taking part in the Blood Collection Program. Minor risks associated with the blood collection may include:
- Blood collection can occasionally cause bruising, pain or, in rare circumstances, loss of consciousness;
- You might learn something about your health that you were unaware of, such as undiagnosed diabetes, which could cause some anxiety.
Other potential risks:
- While we make every effort to protect the confidentiality of the blood sample analysis, there is a small risk that the security of the system could be compromised. Because of the privacy and security measures in place (described in the FAQ "How will my privacy be protected?"), it is unlikely that any unauthorized person who gained access to the system could identify the sample you have provided as belonging to you. You may contact the Ethics Review Office at the University of Toronto if you have any questions or concerns about your rights as a research participant: email@example.com or 416-946-3273.
- We know how important it is to keep information about your health private and confidential. When samples are processed and stored for future research, anything that personally identifies you, such as your name, will be removed and replaced with a unique code. This unique code will let us link the sample you have provided while allowing us to keep your identity confidential. Only a handful of staff at the Ontario Health Study have access to the electronic key that matches your unique code to your identity.
- Your coded information is encrypted, or “scrambled,” before it is transferred to our data centre. Coded information is only transferred over secure connections similar to those used for online banking. These secure connections are very difficult for outsiders to breach. The coded information is then stored on encrypted servers (very large computers) in a locked room that very few people can access. We only unscramble the information after it has safely arrived on our servers. The information you provide will be stored on a separate server from your questionnaire responses or anything that personally identifies you (e.g., name, address, OHIP number).
- Everyone who works for the Ontario Health Study must sign a confidentiality agreement. This ensures that if a staff member were to come across something that could identify a participant, the confidentiality of this information would be strictly protected.
- Finally, it is very important for you to have a strong password to make sure only you are able to access your home page. Choose a password that is a minimum of 8 and a maximum of 12 characters and includes at least one uppercase letter, lowercase letter, number and special character (e.g., @, !, *, etc.).
- The data and samples that are collected as part of the Ontario Health Study will be available to health researchers at recognized institutions in Canada and abroad. The data and samples also may be accessed through an application to the Canadian Partnership for Tomorrow Project, of which the Ontario Health Study is a part (www.partnershipfortomorrow.ca). Access to the data and samples is governed by strict guidelines that protect the confidentiality of participants.
- All researchers using data from the Study must receive approval from a Research Ethics Board or similar committee before access is permitted. Researchers will only have access to “double coded” data, meaning the data has been re-coded from when the information was first collected to provide an additional level of protection to the information and samples. Health researchers will not be able to access any information that would allow them to identify you or any other participant.
- No information about you will be given to your employer, family members or insurance companies.
- A small amount of your blood sample will be analyzed at the medical laboratory immediately after your visit. Once analyzed, de-identified blood analysis results will be transferred securely to the OHS. These data will become part of the OHS database that will be available to approved researchers. Some results from these analyses will be made available to you in the blood analysis report on your personal home page. Please click here to sign into your Ontario Health Study home page.
- All coded information is “scrambled” (encrypted) before it is transferred from the medical laboratory to the Ontario Health Study databases. Coded information is only transferred over secure connections similar to those used by banks. Your results will be stored on a separate server from your questionnaire responses or anything that personally identifies you (e.g., name, address, OHIP number).
Your results will be posted to your personal home page approximately 10 days after your medical laboratory visit. If any of your results are considered outside of the normal range, this will be noted in your report. Please keep in mind that even if your results aren’t considered ‘normal,’ it does not necessarily mean there is anything seriously wrong with you. If you are concerned about your results, we suggest you see your family physician or visit a walk-in clinic as only a physician will be able to interpret your test results in the context of your overall health and determine if these results are problematic.
Powerful technologies now exist that allow health researchers to look at the data and samples you have provided in ways that were not possible in the past. As a result, health researchers who use the data or samples for future analysis may discover something unexpected that is outside the aim of the study they are conducting. This is referred to as an “incidental research finding.” It is possible that a researcher will uncover something that could be life-threatening to you or reveal a serious condition that can be treated or prevented. More importantly, if you were made aware of the condition, you might be able to take steps to prevent it.
Working in conjunction with a Research Ethics Board, the health researchers conducting the analysis and the Ontario Health Study will look at incidental research findings on a case-by-case basis to determine how they should be handled.
- If a very serious condition is found during any of the blood tests, a healthcare professional will contact you. Very serious results in your long-term blood sugar level or complete blood cell count may necessitate additional tests.
- You will be contacted using the phone number you provided on your consent form.
LifeLabs® Medical Laboratory Services has numerous locations throughout Ontario. Once you have completed the necessary online screening questionnaire and printed your requisition form, you may find their nearest LifeLabs® Medical Laboratory Services Patient Services Centre (http://www.lifelabs.com/Lifelabs_ON/locations/default.aspx) and book an appointment at your earliest convenience (https://booking.lifelabs.com/LLBooking/default.aspx/). For more information on how to book an appointment with LifeLabs® Medical Laboratory Services, click on the following link: http://www.lifelabs.com/Lifelabs_ON/Patients/Appointment_Info.asp or call LifeLabs® Medical Laboratory Services at 416-675-3637 or on their toll-free number at 1-877-849-3637, Monday to Friday, 7:00 a.m. to 7:00 p.m.
- You will not be paid for your blood sample, and any costs that you may incur when visiting the medical laboratory will not be reimbursed.
- By providing a blood sample to the Study, however, you will be making an invaluable contribution to health research that may improve the health of future generations. The OHS appreciates the time and dedication of all our participants and understands that the success of the Ontario Health Study would not be what it is without the contributions of our participants.
Prior to booking an appointment for blood collection, you must complete the following steps:
- You must first complete the online screening questionnaire and print your requisition form on your personal home page.
- Print your OHS requisition form.
- Book an appointment through LifeLabs® Medical Laboratory Services’ online appointment booking system or visit any Lifelabs® Patient Service Centres across Ontario.
Initially our Blood Collection Program will be by invitation only, however you may be asked to indicate your interest in providing a blood sample to the Ontario Health Study the next time you log into your Ontario Health Study home page. At the moment, we are inviting participants to take part in stages based on age and other demographic factors. Once you have registered your interest, you will be invited when you meet the current invitation criteria.
You are NOT eligible if you:
- have a blood clotting disease such as hemophilia;
- have had any procedures performed on both sides of your body that would make you unable to give a blood sample (e.g., lymph nodes removed from your arm or chest, an arteriovenous (A-V) shunt for haemodialysis, etc.); and/or
- have observed any condition that makes sample collection impossible (e.g., rashes, oedema, open sores, wounds, cast, occluded veins on both arms, etc.).
- have received a blood transfusion in the past 2 days.
For those participants who are unable to provide a blood sample for safety reasons or those not meeting the current eligibility criteria, we would appreciate it very much if you would consider other ways that you can contribute to the Study. To find out how you can contribute to the Study please see How can I take part in the Study if I am unable to provide a blood sample?
All participants are required to complete an online consent form prior to providing a blood sample to the Study, which ensures that adequate information is given to a participant in order to make an informed decision about his/her participation in blood collection. This requirement is consistent with requirements set forth by the Canadian Tri-Council Policy and our Research Ethics Board regarding the ethical treatment of human subjects.
The brief online screening questionnaire will ensure that is it safe for a participant to give a blood sample depending on the conditions a participant might have, or treatments that a participant may have recently received.
These questions will also be asked upon your arrival at LifeLabs® Medical Laboratory Services to ensure that your health status has not changed since you completed the online screening questionnaire for blood collection. Additional questions will be asked at LifeLabs® Medical Laboratory Services to give health researchers insight on results that are obtained through various blood analyses.
The online screening questionnaire takes approximately five minutes to complete and you are free to stop at any point and come back to it later.
The online screening questionnaire will ask if you are interested in participating in this phase of the OHS. The screening questionnaire will also ask about any recent medical conditions and/or treatments that you might have or have had which may exclude you from giving a blood sample.
- The blood collection appointment should only take 10-20 minutes.
- OHS participants may utilize the appointment booking service (https://booking.lifelabs.com/LLBooking/default.aspx/) in order to be seen immediately upon their arrival at a LifeLabs® Medical Laboratory Services Patient Services Centre and not be put into a walk-in queue.
- You may also provide a blood sample without making an appointment.
- Booking a blood collection appointment is optional, however, if you do decide to book an appointment, you may visit a LifeLabs® Medical Laboratory Services Patient Services Centre at your earliest convenience.
- Once you have agreed to participate in the blood collection initiative, we will remind you to provide a blood sample if you have not already done so.
You may either contact LifeLabs® Medical Laboratory Services directly through their local telephone number at 416-675-3637 or through their toll-free number at 1-877-849-3637, Monday to Friday, 7 a.m. to 7 p.m., to reschedule your appointment or through LifeLabs® Medical Laboratory Services’ Online Appointment Booking System at https://booking.lifelabs.com/LLBooking/Default.aspx.
You will need your requisition form, which you will be prompted to print once you have completed the blood collection screening questionnaire.
Since fasting is not required for blood sample collection, you may eat and drink before your appointment.
- The OHS requisition form identifies OHS participants to LifeLabs® Medical Laboratory Services and informs the staff that the blood sample will be taken according to Study procedures.
- If you cannot print the requisition form or you do not have access to a printer, you will need to take note of the Participant LID number displayed on the top left portion of your requisition form. You can provide the medical laboratory with this information for identification purposes.
- LifeLabs® Medical Laboratory Services will be able to print a blank requisition form at the patient centre when you arrive for your appointment and fill out your information provided you note your assigned LID number.
- Please arrive at the medical laboratory a few minutes before your appointment.
- Since fasting is not required for blood sample collection, you may eat and drink before your appointment.
- When you registered for the Study, you may have given the OHS permission to access personal health information about you that is kept by other organizations, such as the Ontario Cancer Registry. Linking to this information gives health researchers a more complete picture of specific health issues. If you did give consent, the information you provide as part of your medical laboratory visit – including the online screening questionnaire and results of your blood analysis – will be linked with the information that you provided on your baseline questionnaire and the information kept by other organizations.
- Linking the OHS information to other health information will help to provide a more complete picture of the risk factors for certain conditions, outcomes of certain treatments and how the health system is being used. Only de-identified information will be provided to researchers. Health researchers will not be able to identify individuals, but will analyze the linked information of groups of participants with similar samples or health conditions.
Participation in the Ontario Health Study is voluntary and you can withdraw your consent at any time without providing a reason. The withdrawal button can be found on your personal home page. If you choose to withdraw, you will have the following choices about what happens to the data that you have provided, including your blood sample:
- No further contact: The Ontario Health Study will no longer contact you or askyou to participate in ongoing Study activities, but will continue to have your permission to keep and use information and samples you have already provided, and to continue to access information in administrative or medical databases (e.g., the Ontario Cancer Registry) and your personal medical records if you consented to this at the time you enrolled.
- No further access: The Ontario Health Study will no longer contact you or ask you to participate in ongoing Study activities, and will not collect any further information about you from administrative and medical databases (e.g., the Ontario Cancer Registry) or your personal medical records, but will still have permission to keep and use information and samples you have already provided.
- No further use: The Ontario Health Study will no longer contact you or ask you to participate in ongoing Study activities, collect additional information about you and any information or samples you have already provided will be removed from our databases. Your data will be unavailable to health researchers, and you will not be able to access your blood analysis reports on your personal home page. However, it is not possible to remove information or samples that have already been provided to health researchers for analyses. Your signed consent and withdrawal will be kept as a record of your wishes.
If you are an OHS participant wishing to take part in the OHS’ Blood Collection Program and are unsure if your lab is participating in the OHS' Blood Collection Program, please go to http://www.lifelabs.com/Lifelabs_ON/locations/default.aspx to find the participating location nearest to you. Please be aware that only the locations listed on this link will be collecting blood for the Ontario Health Study.
The online portion of the Blood Collection Program, including the questionnaire, consent, and requisition form is available in French. Currently LifeLabs services, both in person and online are only available in English.
LifeLabs’ locations are representative of their communities and may have the ability to converse in the languages common to those communities and will strive to accommodate French language needs upon request. If your preference is to communicate in French prior to or during your appointment, please ensure you contact the Customer Care Centre from 8 a.m. to 4 p.m., Monday to Friday at 1-877-849-3637 to submit your request.
Upon arrival at LifeLabs® Medical Laboratory Services participants who decide to provide a blood sample to the Ontario Health Study will be asked when they last ate and drank, and, if applicable, pregnancy status, last time a participant has had caffeine, alcohol, cigarettes and done vigorous exercise. The responses to these questions give health researchers insight on results that are obtained through various blood analyses.
Although it is not mandatory, please bring one piece of photo identification (e.g., driver’s license, OHIP health card, passport) for verification when checking in for your LifeLabs® appointment.
If you are unable to provide a blood sample, the Ontario Health Study would appreciate it very much if you would consider other ways that you can contribute to the Study. There are many ways you can take part in the Ontario Health Study – from completing follow-up questionnaires to championing the Study. Becoming an Ontario Health Study Community Champion is an excellent way to strengthen your commitment to creating healthier communities. By encouraging your friends, family members and co-workers to take part in the Study, you will be helping us achieve our goal of building one of the largest health studies in the world. Please visit OntarioHealthStudy.ca/community to learn more.