Principle 1: Build a Strong Healthcare Team
Building a strong healthcare team you trust and can talk to freely is the key to becoming an empowered patient. Being comfortable with your team can help you get the answers you seek.
And remember, you have the right to seek a second opinion.
It can take time to feel at ease when taking the lead in your healthcare. You've done other difficult things in the past, and you can do this also. Be patient with yourself and know that with practice, you can develop solid skills as you advocate for your best healthcare.
Your doctors, nurses, and specialists will offer you much of the information you need to make informed health decisions. Your healthcare team may also include your pharmacist, nurse practitioner, physician assistant, and patient navigator. You may also have mental health practitioners such as a social worker, psycho-oncologist or psychologist as well as researchers, lab technicians, and naturopaths.
Empowered patients see themselves as the center of their healthcare team. Only you can make sure you get your questions answered. Only you can keep other team members informed about symptoms and side effects. Only you can follow through on treatments. Only you can make the tough choices about your healthcare.
Here are the four steps for building a strong healthcare team:
Step 1: Select a Care Coordinator
The best thing I ever did? Find healthcare providers I trust. This way I'm comfortable being an active participant. I truly feel it is not only my right, but also my responsibility to fully participate in making decisions about my care and medical treatment.
Since your care may be very complex and involve many specialists, you may find it helpful to choose one healthcare professional who has the main responsibility for coordinating your care. Some people ask their oncologist or hematologist to serve as their care coordinator. Others work with their primary care physician.
Your care coordinator can:
- Help arrange consultations with specialty doctors and supportive care providers
- Maintain your medical records in his or her office (Of course, you'll also want your own copies of your records.)
- Talk with your other healthcare team members when needed
Step 2: Choose Healthcare Providers Who Are a Good Fit for You
It is important to find healthcare providers you can work with productively in the years to come. So keep searching until you find healthcare providers who are right for you.
Healthcare providers have many different styles and points of view. Some are warm and friendly. Others are more formal. Some prefer aggressive treatments. Others are more open to alternative treatments.
It is very important to choose healthcare providers whom you trust and believe in. This will make you more likely to follow their treatment advice.
Choose healthcare providers who treat you with respect and listen to you. They should answer your questions in a way that makes sense to you. They should respond to your calls and messages in a timely manner. If they don't know the answer, they should be willing to refer you to someone who does.
What is most important to you in a healthcare provider? Use our eleven question Healthcare Provider Preference Checklist to discover what is most important to you in a healthcare provider.
Step 3: Find an Expert in Your Disease
Who says you can't have it all? My doctor, specialist, and nurse practitioner all have a great bedside manner AND are up to speed on the information I need. I did a lot of background checking before picking my team, and it has paid off for me. We put our heads together to come up with solutions.
Chances are you've already seen a hematologist or a hematologist-oncologist (hem/onc for short). That's an expert in diagnosing and treating diseases of the blood and bone marrow.
In order to receive the best treatment, you'll also want to see a hematologist or hem/onc who knows a lot about your disease. This is someone who has treated similar cases and stays up-to-date on treatments. While ideal, it is not always possible to find an expert near you who has experience with aplastic anemia, MDS, or PNH.
You may need to go out of your area to visit an expert who is very experienced with your condition. Ask this expert to keep in touch with your local primary care physician, hematologist, or oncologist. There are financial resources you can use to help you pay to see an expert.
Need help finding an expert in treating bone marrow failure diseases?
- Call AA&MDSIF at (800) 747-2820. Ask to speak to our patient educator who can assist you with locating a specialist in your area.
- Contact a teaching hospital. Call the hematology/oncology department at a teaching hospital affiliated with a local university. In many cases, the doctors at these teaching hospitals are most familiar with rare diseases. Because they are in a research and teaching setting, they may be able to offer information on both the standard therapies and new investigational treatments.
- Go online. Visit marrowforums.org and our Facebook page and ask other patients for names of specialists they suggest.
- Ask the community hematologist or oncologist who is treating you. Often these doctors will know of specialists in bone marrow failure already, and can make a referral.
On Getting a Second Opinion
Even if you're happy with your healthcare team, it's OK to get a second, third, or even fourth opinion. Getting a second opinion will not offend your doctor. In fact, most healthcare providers appreciate and encourage another point of view. And it's your right.
Seeking a second opinion can help you and your family with making difficult decisions about your treatment. Be sure to contact your health insurance company to determine if the healthcare provider is covered under your plan, so you will know what your out of pocket expenses will be. While most insurance companies will cover a second opinion, it is a good idea to check with your insurance company before seeing the new healthcare provider. You should be aware of and keep track of your out of pocket expenses.
Step 4: Do Your Part to Become an Empowered Patient
It is important to remind yourself that you are at the center of your healthcare team. Once you have your medical care in place, you'll want to concentrate on what you can do to be a strong player on your healthcare team. Try the tips listed below as you do your part.
- Share information with your healthcare team. Tell them your symptoms – no matter how minor they seem.
- List all medicines (including over the counter medications), vitamins, and alternative therapies you are taking.
- Discuss any emotional symptoms you are having. If you are feeling anxious or having trouble sleeping, let them know. The more you share, the better your healthcare team can do in helping you.
Be a team player
- Go to all your scheduled office visits.
- Once you agree to a treatment plan, be sure to follow through. If the treatment is not what you expected, always talk to your doctor before stopping the treatment.
- Think about what you hope to get out of the visit. Bring your list of questions along with you.
- Ask for a copy of lab results or any health records while you are still at the doctor's office. If your doctors are using electronic health records (EHR), be sure you know how to access them from your computer or smartphone. Ask for help navigating the EHR portal to find the information you need.
- Ask your healthcare providers to give you any medicine or treatment instructions in writing.
Be politely assertive
- Be polite while still being assertive when asking for what you need.
- Try using "I" statements, such as "I think," "I feel," or "I don't understand."
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