Being a Smart Patient

What can patients facing a complex or difficult diagnosis do to find an answer? There are a few key steps that every patient must take:

1. Be Proactive: The first thing you must realize is that it is your health and nobody is as interested in it as you are. You must learn to drive your own care and while the health care system can be confusing and intimidating, you must learn to navigate it. This means not being afraid to ask for what you need from a provider and working with your insurer to ensure that all consultations, diagnostics, and treatments are covered. It also means thinking of your doctors as consultants and understanding their incentives and motivations. They want to help, but you must do your part as well, including following the tips below.

2. Keep your records: You are legally entitled to a copy of all of your medical records. You can ask or fill out a request for them at your doctor’s office or the medical records department of your provider. Create a file, keep it up to date, and bring it to every appointment. Think of ways to organize it that can help a doctor quickly get a picture of your case. For example, you can make a table of the results of the same test repeated over time, a list of doctors you have seen, a list of your medications and the effect they have had on you, a description of your symptoms and their onset, and a family history of illness. If you are so inclined, you can also organize and keep all of your health information online at Google Health or Microsoft Health Vault.

3. Do your homework: You need to get smart on your case, which involves doing extensive research online. You must be well versed on your symptoms, the underlying physiology, potential diagnoses and the likelihood of each, diagnostics and what the results mean (one good resource is labtestsonline.org), and the safety and efficacy of various treatments. Use reputable informational sites such as Harvard Medical School, Mayo Clinic, and Cleveland Clinic as well as connections with other patients through such avenues as Yahoo! or Google Groups or patient social networks like iMedix or dailystrength.org. Create saved searches through mydailyapple.com so that relevant new stories are emailed to you as they emerge. Organize all of your information and keep it as part of your medical file.

4. Find the right doctor(s): Don’t just go to any doctor. Do your research to find the right doctor for your condition and situation. Ask around town, ask others on message boards who they have seen, and search online, including using sites like healthgrades.com, docboard.org, and bestdoctors.com. Be aware that while doctor rating websites do add some value, patients tend to be good at rating a doctor’s bedside manner but not his/her clinical abilities. The single best predictor of a doctor’s skill in treating a certain condition is volume. Try to find the person who has seen the most cases of what you think you may have.

5. Prepare: When you have an appointment, don’t just go into it blindly. Prepare for it as you would for a business meeting or an interview so that you can get the most out of it. Write out all of the relevant information and things you would like to accomplish for the appointment and bring this with you. One potential format includes:

• Objective for this appointment: For example, “I came to see you today because I am continuing to seek a diagnosis for the abdominal pain I have been having for the past six months. I was happy that we ruled out colon cancer and wanted to see what other potential diagnoses we should consider.”
• History of present illness (if a first visit) or new information since last visit (if a follow-up): For example, “Since I last saw you, my abdominal pain has gotten a little bit worse. It seems to get worse with meals, but is improved when I take the medication you prescribed.”
• Specific questions: For example, “From the research that I did, it looked like Celiac Disease could be a potential fit with my symptoms. We didn’t discuss this before and I did not see a Celiac test in my results. Do you think this is within the realm of reason and something we should pursue?”
• Next steps: For example, “Okay, I will have the gluten antibody blood test that you are ordering and will make an appointment to come back in two weeks to discuss these results. Is there anything else I should do or be aware of between now and then?”
  

If you act professionally and treat your doctor professionally, he/she will do the same for you. Don’t be a victim and don’t fall into the trap of self-pity – this isn’t productive in any way. People have challenges and there are resources there to help you find an answer. You just have to know how to use them and to do your part. Most importantly, don’t give up!