“Unless you learn the language of your disease and communicate effectively with your medical team, you put yourself at risk for inadequate treatment and medical errors.  Not all doctors provide individual tutorials.” Elisabeth Russell, President, Patient Navigator

Being diagnosed with a serious illness is a frightening experience.  It is important that you research and educate yourself about your disease and learn to communicate with your medical team.  An informed patient gets better results.  Here’s how:

Gather good information and learn the vocabulary

The Internet has made research widely available, but it can be a double-edged sword.  Consult only credible websites to educate yourself.  Check who operates the site, who funds the site, where they get their information and how current it is.   Do not initially overwhelm yourself with information, and please don’t begin your search by typing “cancer” into a search engine!

While on-line, disease-specific discussion groups can be a valuable source of support and knowledge, but be cautious when reading information posted there and make sure to verify it with other sources.  Our “Evaluate Health Information on the Internet” roadmap will give you more detailed guidance.

After you’ve done this research to educate yourself and to learn the language of your illness, you should explore the resources available on patient education sites specific to your illness.

Not all groups are created equal, however. It’s usually best to start with the larger, national groups.  You can quickly find whether your disease has a national advocacy or educational organization to support it by typing “National Association for (name of disease)” into a good search engine.  There are smaller or very specific advocacy groups as well, but be mindful of their limited scope, mission and access to resources.

Communicate Effectively and Get the Answers You Need

Now that you have learned about your illness and feel prepared with the right questions and vocabulary, make the most of your medical appointment and discussions.

Come prepared to your doctor’s appointment

  • Keep and bring along an updated notebook with your medical history, medications, treatments, lab and pathology results, allergies, reactions, and medical provider contact information.  Be as specific and organized as you can in your record-keeping.  Our “Patient Navigator Medical Planner” is designed for this purpose.
  • If you are seeing a new provider, try to provide a summary to the doctor or nurse prior to your visit to save time.  This will allow more time to discuss your current situation, questions and concerns.  Your navigator can write yours for you.
  • When possible, write your questions ahead of time so that you can focus on the answers you are seeking without being intimidated by information overload once you’re in the office.  For more information on managing paper, read our developing a personal health record, read out “Manage Your Medical Records” roadmap.

Bring someone with you to your visit

  • Bringing a friend or a family member with you is helpful on many levels.  This person will be able to offer you emotional support as well as an extra set of ears to process all the medical information, which may be difficult for you, as the patient, to absorb during an anxious time.
  • Your partner can write down the doctor’s responses, ask for clarifications and go over them with you at home. If the doctor gives permission, you may want to tape record his/her response so there is no way of misinterpreting the information.

Ask as many questions as you need and listen carefully to the answers

  • Think about how you best process information.  Some people immediately want to know as much about their illness as possible; others become overwhelmed and want to approach their decision-making more gradually.  Be honest with your doctor; explain how he or she can best communicate with you.
  • Have a list of questions ready for the doctor.  Take your time and be sure to ask if you’re unsure of something or do not understand it.  If you need more time, ask for it or schedule a nurse visit or phone call so that you may go over everything at the pace and level you need.
  • At the same time, be mindful of the doctor’s time. You will gain his or her respect immediately and be treated more like an active participant in your care if the doctor sees that you have tried to educate yourself and are sufficiently versed in the topic to allow for meaningful discussion of your disease, treatment options, side effects and other issues.

You are not trying to out-do the doctor here, or to presume that your recent personal research trumps his or her years of education, training and medical practice.  However, it shows that you have worked hard and intend to be your own best advocate.

Remember that you, as a health care consumer, will receive the best care if you are an informed, active participant in your medical treatment.  The days when “The doctor knows best” were enough to manage your care are behind us.  It may take a few visits with your doctor to develop a strong partnership.  Be courteous but make sure that your needs are met.  If the relationship is not working, look for another doctor.

For good tips on finding a doctor, check our “Choosing a Primary Care Doctor” roadmap.