Be an informed patient

Take an active role in your health care

You and your family play an important role in making sure that your health care needs are met as successfully and safely as possible. This includes:

  • Thinking about your health care wishes including how you want to get information and who should be involved in decisions about your treatment
  • Knowing what questions to ask—and information to give—your doctor and other providers
  • Understanding your treatment options and working with your doctor to decide which option is best
  • Planning ahead for unexpected medical events and end-of-life care
  • Advocating for improvements at your local hospital

Talk with your provider | Share in decisions | Document your preferences | Be an advocate

Communicate with your provider

Patients, as much as the professionals who treat them, are critical to maintaining good health. You know your symptoms best and are usually the one in charge of following a doctor's treatment plan for your care. Still, it can be hard to talk easily with your health care provider and ask questions when your health needs are complex, you are unfamiliar with medical terminology, and you have been told that ‘doctor knows best.’

If you find it hard to talk with your doctor or nurse practitioner, try some of these strategies:

  • Doctor’s appointments often seem too short. These tips can help you make the most of that time:

    Bring your medications or a list of them —Go to your appointment with a complete list of the drugs you take, including how much, how often, and for how long you’ve been on them. Or better yet, bring your medications in their labeled containers to the visit.

    Track your symptoms —Pay attention to your symptoms leading up to your visit, and keep a list of when and for how long anything out of the ordinary happens. Bring this list to your appointment to discuss with your provider.

    Write down your concerns in advance —Before you go to your appointment, jot down any concerns, questions, or points you would like to discuss with the doctor or other provider and have the list ready so you can easily refer to it during the appointment.

    Call ahead if there are new concerns —If something about your health is especially concerning you and you’d like more time for your visit, call ahead to see if the doctor’s office can schedule enough time on the day of your appointment.

    Bring someone with you —Ask a family member, friend, or caregiver to go with you to an appointment when you have something important to talk about with the doctor. It’s easy to feel anxious or to miss things when discussing technical information about a treatment plan. In these moments, having a second person there to listen to information and follow up with questions can be helpful.

    For more information on how to communicate with your provider, visit the Speak Up™ program. The site contains video overviews, frequently asked questions, and other relevant materials to help you prepare for appointments and communicate effectively.

  • Your treatment plan will be a better one if you've been able to ask questions and get answers that you can understand. But knowing the right questions to ask—or even how to start the conversation—can be challenging in the moment.

    The National Patient Safety Foundation’s “Ask Me 3” program encourages you to ask three questions at every visit:

    1. What is my main problem?
    2. What do I need to do?
    3. Why is important for me to do this?

    Consumer Reports recommends 5 Questions to ask before getting any test, treatment or procedure including whether there are simpler, safer options, and what would happen if you were to delay a test or procedure. The federal Agency for Healthcare Research and Quality (AHRQ) also suggests sets of questions to ask before, during, and after your appointments.

    You may also want to ask about other areas of your health that are important to you, like exercise, diet, or sleep—even if your clinician doesn’t bring them up.

  • Ask questions and repeat back —Health providers sometimes use medical jargon. Don’t be afraid to ask questions when something is unclear and repeat back what you heard to your doctor to make sure you understood the information correctly.

    Take notes —Take notes during your appointment about your treatment options and the steps you want to learn more about.

    Ask for print-outs —Request print-outs summarizing your diagnosis, medications, treatment plan, and any follow-up appointments so that you have copies to use later or share with caretakers. If you don’t understand any written instructions, ask to have them read to you. Some hospitals give patients access to their online medical records and notes. Ask if this is an option.

    Do your homework — After your visit to the doctor, it’s okay to try to learn more about the risks and benefits of a treatment option or the possible side effects of a new drug. If what you find raises any concerns, discuss them with your primary care doctor or specialist.

    For more help on how to choose the right treatment plan for you, check out “Choosing Wisely” Massachusetts. Created by Massachusetts Health Quality Partners (MHQP), the site provides general advice, as well as materials about specific tests and procedures, to help you make decisions about your care.

  • You are the person closest to your treatment, so your knowledge and instincts are key to helping clinicians care for you safely.

    Ask your providers to talk to each other —Ask any specialist you see to discuss your diagnosis and treatment plan with your primary care doctor. This will help your different doctors work together to manage your medications, avoid repeat testing, and communicate key information about your care.

    Follow-up on test results —Ask when to expect test results and call the office if you do not receive them on time. Also, be sure to request a copy of your test results along with an explanation of what they mean. If any results are abnormal, ask to discuss them with your provider.

    Share your test results —Ask that copies of any test results be sent to your primary care doctor to avoid unnecessarily repeating tests.

    Make and keep appointments —Be sure to schedule any follow-up appointments if you are referred to outside specialists. Mark your appointments in a calendar or ask a family member to help track you track them.

    Monitor changes in your health —Notice how your body reacts to new medications or treatments. Write down your symptoms so you can talk about them at your next appointment, or call your doctor if they are serious.

    Speak up —Trust your instincts and speak up if you think something may be wrong with your medications or treatment. You always have the right to ask questions and to stop a procedure until your concerns are addressed.

    Find more tips in MHQP’s Quality Health Care Brochures and AHRQ’s online materials for patients and consumers.

Share in treatment decisions

As a patient, you have the final say over how what medical care you want to receive or not. The best choices about your care are often made jointly between you and your providers. Health professionals have medical expertise to diagnose and treat your symptoms, and you know your body and preferences best. Together—and with the right planning tools—you and your care team can pursue the best course of care to meet your needs.

Here are some materials to help you approach decisions about medical care and assess options:

  • Choosing Wisely Patient-Friendly Resources Materials to help you decide whether or not you need certain tests, procedures, and medications.

    Dartmouth-Hitchcock Health Encyclopedia Diagnosis and procedure-specific information to you make important health decisions about medical tests, medicines, surgery, and other issues.

    I Wish I had Asked that! A short worksheet to help you think through—and remember—what questions to ask at your doctor’s appointment when making a medical decision.

    Ottawa Personal Decision Guide A two-page worksheet to help you make important health decisions including understanding your needs and planning next steps.

    The Patient Medical Journal A tool to help you track your health-related information in a patient binder. It provides templates and charts to help you organize paperwork and write down the right information.

    Informed Medical Decisions Foundation Resources Resources for policymakers and health professionals that you might also find interesting on the theory and implementation of shared decision-making in health care.

Make your health care preferences clear

People have different values and preferences when it comes to making decisions about their health care. For example, some patients may want to be more involved in their treatment decisions with their doctors than others. Or when seriously ill, some people want to live as long as possible through aggressive treatments, while others may be more concerned about the quality of their life during the time they have left.

Take steps to make sure that your wishes are respected and that you avoid unwanted care:

  • Think about your health care preferences—for example, who do you want to make medical decisions on your behalf if you are unable to make them yourself? Are there circumstances under which you would not want to receive life-sustaining treatment?
  • Talk about these preferences with your family, caregivers, and doctors
  • Complete paperwork to document your wishes
  • Make copies of the paperwork and give them to your doctor's office so they can be filed in your medical record. Also share them with family members or others who need to know about your preferences.

Once you’ve taken the time to think about and talk about your wishes, it’s important to write them into a document. Massachusetts has five key health care planning documents:

  1. Health Care Proxy
  2. Personal Directive
  3. Durable Power of Attorney
  4. Medical Orders for Life-Sustaining Treatment (MOLST)
  5. Comfort Care/Do Not Resuscitate Order (CC/DNR)

These are “living” documents that you can update at any time. Remember that your needs or preferences might change.

Learn more about these documents and how to talk about them with your health care providers at Honoring Choices Massachusetts.

For patients who want to focus on their end-of-life plans, try this “starter kit” from The Conversation Project, an acclaimed national effort dedicated to helping people talk about their wishes for care at the end of life.

Be a patient safety advocate

One of the best ways to influence health care practices is to join your hospital’s Patient Family Advisory Council (PFAC). These volunteer councils bring together patients, family members, and hospital staff to improve the care experience by involving those who know it best—the patients. Members may help inform hospital policies, contribute feedback, participate in research design, or lead improvement projects. Today, all Massachusetts hospitals are required to have a PFAC, and some have more than one. Learn more about the role PFACs play and how to get involved.

There may be other ways to get involved. For example, many Betsy Lehman Center projects benefit from input by patients and their families. Let us know if you might like to represent the patient perspective in a future initiative.