Ten principles for (engaged) patients

To parallel my Ten Principles for Clinicians, I offer the following suggestions to patients:

  1. Own it. Your health is at stake, not the doctor’s. The doctor works with you and for you, to help you achieve your goals. 
  2. Be honest. The doctor depends upon the information you provide. Incomplete, inaccurate or misleading information often leads to bad medical care and bad outcomes. If the doctor asks you to do things you will not be able to do, say so (and explain why). If you disagree with the doctor, say so (and explain why).
  3. Be prepared and do your homework. Make a list of the issues you want to cover and the questions you have and give your doctor a copy at the start of the visit. Keep your copy and take notes. Or have your companion (see #8) take notes. Don’t be afraid to do research and bring information in to the doctor. Any doctor who thinks he cannot learn from his patients is delusional. If you have important medical information, make sure your doctor gets it, preferably before your visit so he has time to review it. This includes notes from other offices, results of tests done at work or at local health screenings, and insurance exams. It also includes research you do about your symptoms, diagnoses or treatments.  If you have a chronic disease, bring pertinent information to your visit: home sugars, out of office blood pressures, peak flows.
  4. Ask. If you don’t understand something, ask. If you have other issues you think are important, ask for more time or another appointment. Don’t be afraid to ask for a second opinion. If you would like something written down, ask. 
  5. Time is precious because it is finite, and there is never enough of it. Arrive early enough to be ready when the doctor is. Don’t spend office visit time on your cell phone or mobile device. Don’t spend your appointment time asking about family members. Don’t make an appointment for a sprained ankle and expect to have time to talk about fatigue and abdominal pain and have two skin lesions checked. (If you do, expect a suggestion to make an additional appointment so these issues can be addressed properly.)
  6. Don’t assume the system works. The US health care system is not a system - it is a collection of mostly isolated systems that rarely communicate or collaborate well. Don’t assume that information gets from one office to another or from the hospital to your PCP. Don't assume that no news is good news. Don’t assume that the office will remember to call and set up an annual visit or a 5 year follow-up colonoscopy.
  7. It’s your data. Ask for copies of test results, consults, and notes. When they object and say that the reports contain information you will not understand, smile and say that’s fine because you plan to have the doctor explain it. Review the records for errors and make sure corrections are made. Keep a file of all your information. Bring it (or the pertinent parts) with you to appointments. (This is especially important when you see a new provider.) Encourage your providers to make copies of what they need, but never give up your copy.
  8. Don’t do health care alone. It is often appropriate to bring a friend or relative to your visits as an advocate. Aside from the valuable moral support, two heads will remember twice as much as one head. The bigger the issue, the more important this is. (For poison ivy, this may be silly, but for cancer care visits it is essential.)
  9. We’re all human. And all humans are fallible.  Doctors (and our staff) are just like you, your co-workers, your friends, and your family,  We make mistakes, get tired, have bad days, and have biases, expectations, strengths and weaknesses.  Don’t be afraid to remind your doctor that it is fine to say ‘I don't know but let’s find out.’ If you expect your doctor or doctor’s office to be perfect, you will inevitably be disappointed.
  10. Relationships. If you want personalized care, it helps to be personal. Take every opportunity to humanize the process. Smile at the receptionists and nurses as well as your doctors. Use their names. Make eye contact. Show appreciation. Say thank you. 

 

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