Finding and Evaluating Resources

Finding and Evaluating Resources: Detailed Information

This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources sections for questions to ask and for more resources.

Resources provide you with information about your cancer experience. A resource can be something that you read, a person that you talk with, or an organization that helps you. Many different resources offer advice and information for cancer survivors.

A variety of resources can help you learn about cancer and treatment including the research that is going on in with your specific type of cancer. Resources can help you find the support you need and help to improve your quality of life during and after cancer.

Resources can help you find information about cancer-related topics such as how to:

• Determine your cancer or treatment's effects on your body
• Manage side effects
• Communicate with your health care team
• Take a more active role in your health care
• Find a good doctor or treatment center near where you live
• Deal with the emotional effects of cancer
• Get help with your financial problems
• Get involved in public policy and advocacy

Where can good resources for survivors be found?

Resources for survivors are available through a variety of sources such as online, in print and through nonprofit cancer organizations. When you find a new resource, look into who is providing the information and service.

• Cancer organizations: Many nonprofit organizations provide information for cancer survivors through websites, printed materials and support services. Cancer organizations are a great way to access many different quality cancer resources. Even though a cancer organization is providing the information, evaluating the information is important to ensure that it is accurate and right for your situation.
• Friends and family: Survivors often get lots of advice from friends and loved ones. Other survivors might also offer you advice about what helped them through their treatment. Even though most people are trying to offer you helpful information, it is still important to evaluate what you are told. Not all of it may be helpful or right for you. Talk to your health care team about this information.
• Health care team: Many survivors get health information from their health care team. They may tell you about research that is currently going on that may affect your life after cancer. They can also answer any questions you have and direct you to other resources. Each health care team member has a different level of knowledge, and some may specialize in certain areas. You have the right to get second, third, or more medical opinions if you are not sure what is best. You can also discuss what one member of your health care team says with others on your team to get their input as well.
• Internet: You can find all sorts of information on the Internet including articles from medical journals, chat rooms for survivors, websites about cancer and much more. Some of the information can help educate you about cancer and treatments. It may also provide suggestions and support to address some of the challenges that cancer might bring. However, anyone, anywhere can publish information on the Internet--so it is always important to evaluate it. Avoid giving out personal information unless you know who is receiving it, how it will be used, and why it is needed. When in doubt, contact a nonprofit cancer organization to ask about quality resources for your needs that are available online.
• Printed materials: Many books, magazines and pamphlets contain cancer information. As with information on the Internet, publishing printed materials can easily be done. Always evaluate printed materials to make sure that they are accurate and right for your situation. Also, consider who provided the information and if anything is being marketed. For example, a brochure might be produced by a pharmaceutical company that is marketing a specific type of medication that is produced by them. Talk with your doctor if you have questions or would like to know more.

When you evaluate written material or information on the Internet, you should find out:

• Find out who is providing the information. Specific advice or health information on a website should be followed by the information's source. If the source is an organization, find out more about the organization and who writes the information for the resources that they provide. If the source is an individual, look for his or her professional credentials including affiliation with an institution such as a medical center or organization

  The following is a list of common educational credentials you might see next to a person's name:

  • MSW=Masters of Social Work
  • PhD=Doctorate of Philosophy
  • MD= Medical Doctor
  • DO=Doctor of Osteopathy
  • RN=Registered Nurse
  • Esq. or JD=Law Degree
  • MSN=Masters of Science in Nursing
  • MPH=Masters of Public Health
• Look for the date when the information was written. Because research about cancer and survivorship is ongoing, new information is being written constantly. Information that has been printed or published on a website could change or become outdated. A good resource will list the date that the information was published. Information that was written some time ago may have changed.
• Find out who paid for or published the information. In some cases, private companies, such as a pharmaceutical company, sponsor printed resources and websites. While sponsorship does not automatically make the information unreliable, be cautious if they are promoting a certain drug or product or asking you to purchase something.
• Ask your health care team about the information or service. This step is very important in evaluating a resource. Even if the information is written by a qualified health professional, is recent, and is published in a trusted resource, it may not be right for you. Also, your health care team can help explain any parts of the information that seem confusing or unclear.

You can also learn more about an organization by looking at their website or calling an information line. In your evaluation of an organizational resource, find out:

• What kind of services the organization offers
• Who works for the organization and whether they have social workers, doctors, nurses or other health care professionals on staff
• How often the organization updates the information they provide
• What your health care team thinks of the organization
• Whether subject matter experts developed the information and review it on a regular basis.

This document was produced in collaboration with:

Cynthia Cantril, RN, MPH
Executive Director and Navigator
Big Sky Cancer Recovery and Resource Center

Works Cited
Willis, Joanie. The Cancer Patient's Workbook. Dorling Kindersley, 2001.

National Cancer Institute Publication. Facing Forward Life After Cancer Treatment: A Guide for People Who Were Treated for Cancer Number 02-2424, April 2002.

Finding and Evaluating Resources: Suggestions

The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources section for links to more resources.

• Identify the questions you have and what topics you want to research.
  
  
  • Make a list of all the questions you have about your cancer, treatment or any other area of your life after cancer that you want to know more about.
  • If you aren't sure what areas you want to research, try looking up some general information about your cancer or the type of treatment you received.
  • Ask your health care team if there are any late-effects of your treatment that you should know about, so you can research symptoms and how to manage them.
• Search for books, websites, people or organizations that may have helpful information.

  Cancer support resources can generally be found by:

  • Checking book stores in your area and online
  • Visiting a public, school, or university library
  • Talking with people who have been affected by cancer
  • Asking members of your health care team
  • Checking with your local hospital or treatment center
  • Asking a nonprofit cancer organization for assistance
  • Contacting a government agency that offers information about cancer
  • Doing an online search for support groups and information
• Discuss what you have found with members of your health care team.

Finding and Evaluating Resources: Additional Resources

The previous sections of this document provide Detailed Information, Suggestions, and questions to ask related to this topic. This section offers a listing of additional resources that are known to provide support and quality services that may be helpful to survivors during the cancer journey.

Online: Complete an intake form through the LIVESTRONG website.
Phone: 1.855.220.7777 (English and Spanish)
Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.

LIVESTRONG offers assistance to anyone affected by cancer, including the person diagnosed, loved ones, caregivers and friends. The program provides information about fertility risks and preservation options, treatment choices, health literacy and matching to clinical trials. Emotional support services, peer-to-peer matching and assistance with financial, employment and insurance issues are also available. To provide these services, LIVESTRONG has partnered with several organizations including Imerman Angels, Navigate Cancer Foundation, Patient Advocate Foundation and EmergingMed.

211 (telephone information service)
www.211.org

In many states, you can dial 2-1-1 to get information about local support services, including food banks, financial assistance programs, job training programs, health insurance and childcare. You can also go to the 211 website and enter your ZIP code to link to your local 211 service. Your local 211 service website should provide a listing of community programs and services available in your area.

Joe's House
www.joeshouse.org

Email: info@joeshouse.org
Phone: 1-877-563-7468

Joe's House is a nonprofit organization that allows survivors, their families and caregivers to search for places to stay when traveling to another city for treatment. By selecting the city you are traveling to or the name of the health care facility where you will receive treatment, you can view a list of hotels, nonprofit housing, homes, apartments and motels near the health care center. Information includes each location's price and distance from the treatment facility. If medical discount prices are offered, that information is listed, and you will receive instructions on how to make a reservation to receive the medical discount. You can go online or call the organization's toll-free number. The website also includes a list of other cancer resources such as organizations that may be able to help with transportation arrangements.

U.S. Institutes of Health - National Cancer Institute (NCI)
www.cancer.gov

Online: Online assistance is available in English or Spanish through the LiveHelp instant messaging system. This service is available Monday-Friday, 9:00 a.m. to 11:00 p.m. (EST).
Email: Send an email through the "Need Help?" section of the website
Phone: 1-800-422-6237
TTY for deaf and hard of hearing callers: 1-800-332-8615
Information specialists answer calls Monday-Friday, 9:00 a.m. to 4:30 p.m. local time.

The National Cancer Institute's website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment, financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications.

Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using this Web site and can tell you about NCI's printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.