Unpack this topic
I don’t want to believe, I want to know.
During treatment, you saw many of the members of your healthcare team often. They were usually readily availble to answer your questions and provide advice. As you are now in recovery, your contact with your healthcare team will probably be less frequent. Many choices and decisions about your health will now be up to you.
You may have a lot of questions as you think about your next steps, and you may wish to look for some answers on your own. The internet is one of the most popular tools for looking for information, and offers quick access to almost every subject that exists. Although some of this information is based on scientific facts from credible sources and can generally be used with confidence, a great deal of information on the internet is not trustworthy and may not be based on facts or good science.
When searching for anything online—especially anything related to the health and medical fields—it is very important to make sure that the information you find is accurate and reliable. Keep in mind that information you find online should not replace advice from a medical professional. It is always best to talk with your healthcare team about any information that you have found on your own. They know you and your medical history
This chapter offers advice on how to search for reliable health and medical information, including:
- Tips and strategies for searching online.
- A list of respected sources of health information
- A list of resource centres to help you to find the information you are looking for.
How to search for reliable health information
It’s important that the information you find is accurate, up-to-date and reliable. It’s also important to be able to know the difference between information that is based on scientific facts and information that is based on someone’s opinion or their personal experience. To do this, it is essential to try to verify the quality and trustworthiness of your sources. Librarians and researchers can often help with this.
Today, many people and most organizations use the internet to publish information. Because anybody can do this, there is no control about the accuracy of the content. It is up to the person who is looking at a website to decide if the information is reliable or not. Taking a closer look at a website and the information it contains will give you a good idea of whether or not you can depend on this source for information. Websites with the ‘HON’ certification (Health on the Net: www.hon.ch) adhere to a set of standards for the presentation of online health information.
Although most of the advice in this section refers to searches for information on the internet, in general it can also be applied to information or articles that you find in magazines or newspapers.
The 3 Ds of a reliable search
Keep in mind the following 3 Ds to verify the reliability of the information you find: date, documentation and double-check.
Is the website, web page, or article recent and up-to-date?
- Check that the information is current. If it is not, the information or advice may no longer be accurate. If you cannot find a date, do not assume that the information is current.
- You can verify if information on the web is current by checking the date of the posting, and/or the timeline details at the bottom of the page.
- For information that is downloaded from a website—for example a pdf article—the date is usually at the top or the bottom of page.
Is the information from a reliable source?
Check the source (where the information is coming from). Use the following checklist to evaluate the quality of the information you have found. Verifying these items will help you decide if you feel comfortable about the accuracy of the information.
How did you find the web page?
- Was it by using a search engine such as Google, Yahoo or Bing, etc.? Results from search engines usually also include advertisements for other websites related to your search, which are called ‘sponsored findings’. ‘Sponsored findings’ are often at the top—or to the side—of the search results page, and are often bolded or highlighted in a different colour. While some of these sites may be useful, many are selling products and may choose to only publish information that is favourable to their products. This kind of information would be less objective.
- Was it through a library database or an institution, such as a hospital? These sources usually gather information from reliable medical information databases.
- Was it recommended by a member of your healthcare team or a friend? A healthcare professional is a good source for advice on where to find reliable information online about their specialty.
- Was it from a respected organization website/database such as the Canadian Cancer Society? Respected, non-profit cancer information and support websites usually work closely with health professionals to ensure that the information they offer is accurate, and that the links to other websites that appear on their page are also reliable.
Who is sponsoring the website?
- Look closely at the internet address or website URL (www.domain-name.com). The extension at the end can indicate the type of organization the information is coming from. This can help you understand the objective of the group for posting information online.
For example, the goal of a government (.gov) or non-profit (.org) website is usually to provide quality health information for the general public. A commercial website (.com) may be posting health information in order to sell a product or service. Other common extensions include:
- .com = a commercial (for-profit) or private source
- .net = a commercial, non-commercial or private source
- .gov = a national or state government
- .qc.ca = the Quebec provincial government
- .on.ca = the Ontario provincial government
- .org = a non-profit organization
- .ca, .fr, .ch, .uk, etc. = the country of origin of the website (.ca Canada, .fr France, .ch Switzerland, .uk England)
What is the main purpose of the website and who is it for?
- It is important to check that the web information you are looking at is not trying to sell a product or is only expressing a personal opinion. The main page of most reliable websites have a tab in the menu at the top called ‘About us’ or ‘About this site’ that gives information about the authors of the website and why the website exists. This will give you an idea about the quality of the information. For example, commercial sites may emphasize a particular point of view if they want people to buy their products or services.
- The ‘About us’ tab—also called the home page—should explain who the information is intended for and how it should be used. This may help you decide if the information is useful for you and your current situation.
- Public and national health organizations, such as the Canadian Cancer Society or the National Comprehensive Cancer Network (United States), usually provide information that respects the policies of the country in which they are based. When looking for certain types of information, you may want to make sure that it is consistent with Canadian and provincial health regulations. For instance, if you are looking for information about a complementary therapy you have heard about, you may want to verify the recommendations and regulations for its use in the province you live in.
What is the type or source of information?
- Does the article or the page list its sources? A good health information website will usually list references of the sources or publications they used to put together the information.
- Who are the authors? If the author is listed, see if their qualifications are also listed. You can also search the author’s name to see if they belong to a reliable institution or organization.
- Does the website list experts who review the information? Is the information updated on a regular basis? This will help you verify the reliability of the information.
- Does the information seem personal or emphasizing a certain point of view? Reading about someone’s cancer experience, such as on a blog or in a chat room, can be very interesting and can offer some insight into how another person has managed their illness; however, it is important to keep in mind that this information is about a single personal experience and cannot be checked for accuracy. When you find this kind of information, it is best to check with a healthcare professional before applying it to your own situation or following any of the advice.
- Does the website have a disclaimer? It is common for reputable health information websites to inform readers that their content is for informational purposes only and does not replace the medical advice from a healthcare professional. If the website does not have a disclaimer, it may be trying to sell a product or service, or want to emphasize a particular claim or point of view.
How does the information compare with other sources?
- When you are searching for information online, compare what you find with other information on the same topic for consistency.
- Look at a few sources on the subject you are interested in. Then compare the information to see if the different sources are saying basically the same thing. Be skeptical if you cannot find similar information from more than one website.
- Verify the information you find with a healthcare professional.
A lot of false information about cancer is circulated on the web and on social media. Many posts about the causes and treatments of cancer on sites such as Facebook are incorrect. It is important to double check the sources, and discuss information that you find on the web with your healthcare team.
Tutorials on evaluating health information
- Evaluating Internet Health Information: A tutorial from the U.S. National Library of Medicine: www.medlineplus.gov/webeval/webeval.html.
- Online Health Information Aid: www.healthsanteinfo.ca. This site, sponsored by McGill University, Department of Family Medicine, has tutorials for search and evaluating health information, as well as other information to guide you in finding health information on the web.
- Be critical of the information you find. Check your search results with the 3 D’s: date, documentation and double-check (see above).
- Verify Wikipedia articles in the same way as with any other online information. The information on Wikipedia is ‘crowd-sourced’, which means that anyone can post information on this site. Wikipedia entries are not reviewed by experts.
- Be aware that when an organization updates or reworks its website, its pages can be removed or changed without notice.
- Use the ‘search’ tool on a credible website—such as a national health organization—and enter a keyword. For example, if you are looking for information about a side effect like fatigue, you could go to a reliable site like the Canadian Cancer Society (www.cancer.ca), go to the search box located on the top right of the homepage, and type the keyword ‘fatigue’, and then press enter to see the results.
- Check the accuracy of the information with your healthcare team. You could bring a printed page or your tablet with the information saved to your next appointment.
- Search offline as well. You can also get information by talking to experts in person. This gives you the opportunity to ask questions at the same time, instead of just trying to absorb a lot of information. For example, if you are looking for information about nutrition after cancer treatment, you may want to consult with a nutritionist or a dietitian. If you want to get back on track with a physical activity but don’t know where to start, you may want to request a referral to a physiotherapist or to a rehabilitation program. More information and resources about nutrition and physical activity can be found in Chapter 4: Regaining function.
Where to search for reliable health information
There are many trustworthy sources on the internet where you can find accurate health information. This section includes a list of reliable sources of cancer and general health information that you may find helpful as a starting point in your search for information about your recovery. You can use this as guide to search for more information that interests you or is more specific to your needs or to look for information for your particular region or city. Most of the sources listed have information that would be helpful to anyone, regardless of location. International sources may contain some information that is not relevant for Canadians.
Publications from national health organizations and healthcare institutions are usually accurate and kept up-to-date. This might be a good place to start when you are looking for information. Most publications can be downloaded from the website. International sources may contain some information that is not relevant for Canadians. A few of these reliable sources include:
- Canadian Cancer Society: www.cancer.ca/en/support-and-services/resources/publications/?region=qc.
- National Cancer Institute (U.S.): www.cancer.gov/publications/patient-education.
- Quebec Cancer Foundation publications: www.fqc.qc.ca/en/about/our-publications.
- MUHC Patient Resource Centre: www.muhclibraries.ca/patients.
- Hope and Cope–Jewish General Hospital: www.hopeandcope.ca/resources/#publications.
- Cancer Care Ontario: www.cancercareontario.ca/en/resources-patients-and-families.
- Princess Margaret Cancer Centre: www.uhn.ca/PrincessMargaret/PatientsFamilies/Patient_Family_Library/Pages/search_cancer_information.aspx.
- BC Cancer: www.bccancer.bc.ca/our-services/services/library/bc-cancer-agency-publications.
- Alberta Cancer Foundation – Leap Magazine: www.albertacancer.ca/leap-magazine. Leap is a publication focusing on the cancer experience, with content ranging from testimonies from patients to news in cancer-related research.
Specific information on cancer
Below is a list of some of the reliable Canadian and provincial resources available for cancer information, as well as some international organizations resources. You can use this as guide to search for more information, including information specific to your own province. Many of the resources have information that would be helpful to anyone, regardless of location. International sources may contain some information that is not relevant for Canadians.
- Centre intégré de cancérologie (CHUM): www.chumontreal.qc.ca/patients/cicc. Provides information on different types of cancer and patient testimonials in videos.
- La Fondation Virage (CHUM): www.viragecancer.org/services/documentation. Provides information, videos, and a list of resources (in French only). A librarian in the Documentation Centre can help you find the right book or pamphlet for what you want to know about.
- The Cedars Cansupport Learning Centre (MUHC): www.cansupport.ca. Provides educational programs and services to help patients understand their illness and manage their care. Services include pamphlets, a library, public lectures, referrals, survivorship information, and information on complementary therapies.
- Jewish General Hospital–Segal Cancer Centre: www.jgh.ca/care-services/segal-cancer-centre. Provides clinical, educational and support services.
- Hope and Cope (Segal Cancer Centre): www.hopeandcope.ca/resources/#lectures. A psychosocial support organization that offers patient education lectures, workshops, information kits, a library (books, audio/videotapes, DVDs), pamphlets, music, one-on-one support, and support groups.
- Princess Margaret Institute: www.uhn.ca/PatientsFamilies/Health_Information/Pages/default.aspx.The Princess Margaret institute is a major cancer specialist centre in Canada. They provide library resources, patient and family services, and information about life after treatment (www.uhn.ca/PrincessMargaret/PatientsFamilies/Cancer_Journey/After_Treatment/Pages/overview.aspx).
- ELLICSR Health, Wellness and Cancer Survivorship Centre: www.ellicsr.ca/en/Pages/default.aspx. Affiliated with the Princess Margaret Cancer Centre.
- Alberta Health Services: www.albertahealthservices.ca/cancer/Page16299.aspx. Integrates all health services in Alberta and offers information on every stage of cancer treatment in the province, for both patients and caregivers.
- My Health Alberta–Indigenous Cancer Care Experiences: myhealth.alberta.ca/alberta/indigenous-cancer-care . Contains resources and testimonies specifically tailored to indigenous peoples’ experience with healthcare and cancer.
- BC Cancer–Provincial Health Services Authority: www.bccancer.bc.ca/our-services. The BC Cancer website is used as a repertory for many cancer centres across the province and offers important information on treatment and recovery.
- Island Health–Cancer Care: www.islandhealth.ca/our-services/breast-cancer-breast-health-services/cancer-care. Island Health focuses mostly on breast cancer, offering information on the entire cancer experience, from diagnosis to emotional support
- Government of Canada - Public Health Agency of Canada: www.canada.ca/en/public-health/services/chronic-diseases/cancer.html. Provides information on different types of cancer, prevention measures, and Canadian cancer statistics.
- Government of Quebec–Ministère de la Santé et des services sociaux: www.msss.gouv.qc.ca/ministere/lutte-contre-le-cancer. Provides links to ministerial publications about health, oncology and cancer research as well as links for information on cancer in Quebec, Canada and abroad. Most of this information is available in French only.
- Government of Ontario – Health and Wellness: www.ontario.ca/page/cancer-prevention-and-care. Provides cancer-related information and a list of services for Ontario residents, such as information on screening and where to find a doctor.
- Cancer Care Ontario: www.cancercareontario.ca/en/guidelines-advice/modality/patient-education/self-management-cancer-toolkit. The ‘Self-Management in Cancer Toolkit’ provides links to resources on self-managing with a cancer diagnosis.
- Alberta Health Services: www.albertahealthservices.ca/cancer/Page16299.aspx. Integrates all health services in Alberta and offers information on every stage of cancer treatment in the province, for both patients and caregivers.
- BC Cancer–Provincial Health Services Authority: www.bccancer.bc.ca/our-services. The BC Cancer website is useful to people of all regions, offering information ranging from the latest cancer research, to explaining what cancer is, to coping with a diagnosis.
Canadian foundations and organizations
- Quebec Cancer Foundation: www.fqc.qc.ca/en. The Quebec Cancer Foundation offers a virtual library and a free lending service at intranet.fqc.qc.ca:8080. Most of the documentation is in French, but there are resources available in English (click on the tab Dossier: Documentation en langue anglaise). You can also contact their librarians at 1-800-363-0063. They will act as your research guide and offer helpful suggestions. They can also help you understand information that you find on the Internet that is not clear to you.
- Breast Cancer Society of Canada: bcsc.ca.
- Colorectal Cancer Association of Canada: www.colorectalcancercanada.com.
- Lymphoma Canada: www.clfoundation.org/lymphoma-canada.
- Leukemia and Lymphoma Society of Canada: www.llscanada.org.
- Canadian Liver Foundation: www.liver.ca.
- Lung Cancer Canada: www.lungcancercanada.ca.
- Ovarian Cancer Canada: www.ovariancanada.org.
- Pancreatic Cancer Canada: pancreaticcancercanada.ca.
- Prostate Cancer Canada: www.prostatecancer.ca.
- Testicular Cancer Canada: www.testicularcancercanada.ca.
- Cancer Care Ontario: www.cancercare.on.ca.
- Canadian Cancer Society: www.cancer.ca/en/cancer-information/cancer-type/see-all/?region=qc.
- BC Cancer: www.bccancer.bc.ca/health-info.
- Alberta Health Services: www.albertahealthservices.ca/info/Page12623.aspx.
- American Cancer Society: www.cancer.org. The American Cancer Society is a non-profit national health organization dedicated to supporting cancer research and delivering patient programs and services throughout the United States.
- CURE: www.curetoday.com. CURE is an American consumer publication focused on cancer, with broad distribution to cancer patients, cancer centres and advocacy groups.
- Memorial Sloan Kettering Cancer Center: www.mskcc.org. The Memorial Sloan Kettering Cancer Center is a private institution in the United States reputed for their research, educational programs and patient care.
- Cancer.Net—American Society of Clinical Oncology: www.cancer.net/survivorship. Provides information on a wide range of topics related to cancer patients post-treatment including long-term side effects, rehabilitation, life after cancer, healthy living and dealing with the fear of recurrence.
General health information
Below is a list of some of the reliable Canadian and provincial resources available for general health information, as well as some international organizations resources. You can use this as guide to search for more information, including information specific to your own province. Many of the resources have information that would be helpful to anyone, regardless of location. International sources may contain some information that is not relevant for Canadians.
- Jewish General Hospital–The Patient & Family Resource Centre: www.jgh.ca/patients-visitors/patient-family-resource-centre/about-the-pfrc. Helps you find accurate and up-to-date health information on diseases, treatments, medications, clinical trials, self-help groups and more. At the Centre, a librarian can help you do a search and guide you to the best resources to meet your specific needs.
- MUHC libraries: www.muhclibraries.ca/patients/general-health-sites. Provides a library service for patients to borrow books and check information online. Their website has general health information and an online chat option at the search page, where you can ask a librarian for help looking for information.
- University Health Network hospitals: www.uhn.ca/PatientsFamilies/Health_Information/Pages/default.aspx. Health information, patient and family services, and a patient education and engagement program.
- Island Health: www.islandhealth.ca/learn-about-health. Provides multiple links for information on different health-related subjects and services offered in the Vancouver and BC area.
- Alberta Health Services: www.albertahealthservices.ca/info/Page12623.aspx. The ‘Information for Patients and Families’ section contains links to a variety of health-related subjects as well as a list of health care centres and hospitals.
- Health Canada: www.hc-sc.gc.ca/index-eng.php.
- Public Health Agency of Canada: www.canada.ca/en/public-health.html.
- Institut national d’excellence en santé et en services sociaux: www.inesss.qc.ca (in French only).
- Institut national de santé publique: www.inspq.qc.ca/en.
- Info-Santé 8-1-1 offers confidential phone call consultation with a nurse, free of charge: www.sante.gouv.qc.ca/en/systeme-sante-en-bref/info-sante-8-1-1.
- Alberta Health Services: albertahealthservices.ca/default.aspx. Information on health conditions, healthy living and medications. Includes patient care handouts.
- Government of Ontario–Health and Wellness: www.ontario.ca/page/health-care-ontario. This site lists the services offered in the province as well as how to access them.
- Telehealth Ontario: www.ontario.ca/page/get-medical-advice-telehealth-ontario. This page directs you to a toll-free non-emergent medical advice hotline to contact registered nurses, and is available 24/7.
- HealthLink 8-1-1 Alberta: www.albertahealthservices.ca/info/Page12630.aspx. Useful for 24/7 non-emergent medical advice in Alberta.
- Government of British Columbia–Health: www2.gov.bc.ca/gov/content/health. Contains general health information, information on how to access BC healthcare services as well as what these services are.
- HealthLink 8-1-1 British Columbia: www.healthlinkbc.ca/about-8-1-1. This site is useful for 24/7 non-emergent medical advice in British Columbia
Canadian associations and organizations
- HealthLink BC: www.healthlinkbc.ca. Offers non-emergency health information and advice. Some information, such as provincial resources, may not be relevant to residents of other provinces.
- Passeport Santé: www.passeportsante.net. A Quebec public health information website. This website is available in French only.
- Public Health Ontario: www.publichealthontario.ca. Informational website containing articles and graphs on health topics and testing.
- Alberta Health Services: www.albertahealthservices.ca/info/Page12623.aspx. The ‘Information for Patients and Families’ section contains links to a variety of health-related subjects as well as a list of health care centres and hospitals
- Health On the Net Foundation: www.hon.ch/HONsearch/Patients/index.html. This non-profit organization based in Switzerland links a wide variety of evidence-based and trustworthy health and medical information websites under one search function.
- Mayo Clinic: www.mayoclinic.org/patient-care-and-health-information. Mayo Clinic is an American non-profit organization that provides general health information written by health professionals.
For more information on reliable sources for cancer and health information, see Chapter 4: Regaining Function / Section 5: On your way to recovery.
Support groups can provide important opportunities to share experiences with other people who are also going through recovery. Specific medical or health information shared through this kind of a support system should be discussed with a healthcare professional who knows you, to verify that the information is correct and appropriate for your situation. This also applies to online blogs or chat rooms, where the details of the personal experiences of others can often be misleading or inappropriate in terms of your situation, even though they may have certain similarities.
Below is a list of some of the general and provincial support group resources available. You can use this as guide to search for more information, including information specific to your own province. Also see Chapter 3: Emotions, fears and relationships / Section 7: Healing over time and with support for more information.
- Canadian Cancer Society: action.cancer.ca/en/living-with-cancer/how-we-can-help.
- Cancer Chat Canada: cancerchat.desouzainstitute.com.
- Quebec Cancer Foundation: www.fqc.qc.ca/en.
- Hope and Cope: www.hopeandcope.ca.
- CedarsCan Support: www.cansupport.ca.
- Wellspring : wellspring.ca/online-programs. Also available in Calgary, Edmonton, Nova Scotia, and PEI.
- Heart Place Cancer Support Centre: hearthplace.org/adult-programs/support-groups.
- Gilda’s Club: gildasclubtoronto.org/course-category/support-group.
- Wellspring : wellspringcalgary.ca/programs-services/member-program-offerings. Also available in Toronto, Edmonton, Nova Scotia, and PEI.
- ProstAid Calgary: www.pccncalgary.org. A support group for men with prostate cancer living in Calgary.
- Alberta Health Services—Tom Baker Cancer Centre: www.albertahealthservices.ca/findhealth/Service.aspx?id=1047804&serviceAtFacilityID=1074213#contentStart.
- BC Cancer, Support Programs: www.bccancer.bc.ca/our-services/services/support-programs.
- Georgian Bay Cancer Support Centre: gbcancersupportcentre.ca/home/find-support/british-columbia. Offers an extensive list of many support group programmes or general support classes across British Columbia.
- Prostate Cancer BC: www.prostatecancerbcsupportgroups.ca.