Are you an e-patient? An electronic patient or e-patient actively makes health care decisions with their doctor versus the doctor deciding what is best.
Equip
Medical stuff on the internet can be overwhelming, if not downright scary! The thought of weighing in on your own medical decisions may seem crazy to some of you. But today, most doctors expect patients to have an opinion about their own health and to actively make their own medical decisions1. Before visiting my doctor, I get prepared. Here’s my strategy to equip e-patients:
1. Record – write down questions, symptoms, times, dates, and even ideas
2. List – make separate lists for current medications, symptoms, and questions
3. Learn – look over the basics before tackling more in-depth topics
Record & List
Why record everything and make lists? Well, have you ever been sitting there in one of those blue, gusty gowns? You know the ones that allow your entire backside to hang out in an embarrassing way? You try to wrap it around you but it’s like trying to keep your tortilla wrap closed around all those yummy fillings in the microwave – futile! Everything just falls out anyway. And over the years I’ve just given up and let it all fall out. These gowns are just dehumanizing as one article put it!2
When you’re occupied with gowns, exam anxiety, and test stress, I find the only way to keep sharp is that handy list. Recording symptoms in an organized, thoughtful way helps your doctor understand what is really bothering you. The lists help focus the office visit and speed up the doctor’s diagnosis and testing process.
Learn
Your doctor is speaking but it’s like another language or maybe you’re having a stroke? I’ve been there and it’s surreal. Even as a medical professional, I’ve been on the other side as they say. I’ve suffered from confusional migraines. These things are unreal and usually occur in children and adolescents. The symptoms are a lot like strokes, so I have a profound love for all stroke survivors – how very strong and wonderful you are! Imagine being so frightened and confused yet everything seems familiar somehow. People may come up to you to help, ask questions and even lead you to safety, but you don’t recognize them. Nope, I didn’t even recognize my own son and it was horrifying when I realized it a week later.
So I understand the vulnerability of not understanding the words being said, the feeling of fear seeping into your heart about a very real health issue that may affect your income, your family, or your life. One main reason I blog is to give hope, arm you with information, and help you feel a little less vulnerable.
Learning Plan
It’s simple, first, look at the lists you’ve made. Pick out the words you’ve used most often and focus on learning more about them. Then work your way up slowly from the basics. Gradually, you’ll find yourself learning more advanced health topics. Take your time because medical science is not always easy to understand. You’ll need time to familiarize yourself with new clinical vocabulary. But by studying ahead of time, you’ll better equip yourself to discuss your own symptoms, diagnosis, testing options, prognosis (medical outlook), and treatment options with your healthcare provider.
If you’re looking for a place to start learning now, see this link for reliable medical information on the web.
–Don’t understand all this medical talk? No worries, here are the basics.
–Comfortable with science or medicine? Try these in-depth links.
–Already a clinician or work in the medical field? Guru topics.
If you can, review advanced topics on your condition before your doctor’s visit. This means reading the clinical practice guideline(s) for your diagnosis. These guidelines help you understand why your doctor makes certain medical decisions (e.g., tests, treatments, referrals).
“Give people the information and data they need to feel prepared, to feel in control; give them an outlet to share this; give them a chance to truly understand, and the impact on health can be life-changing, even life-saving.”
—Dave deBronkart
The recent explosion of telemedicine provides e-patients with tons of medical information on the web. And as doctors continue to involve us in the decision-making process, medical organizations will continue to focus on widespread patient education. So jump in and start learning today!
Enable
The word enable means to give someone the authority to do something. Enabling you as an e-patient means helping you understand that you are responsible for your own healthcare decisions. You alone live in your body, with all its symptoms, aches, and illnesses. Your job as the e-patient is to help yourself. So, read up and speak up!
What’s the doctor’s job? Doctors balance your symptoms and your preferences with their clinical experience and the clinical guidelines for your disease. Your doctor helps you understand your medical diagnosis, your treatment options, and how these affect your life.
Your doctor will:
- Ask questions about your family medical history and record your personal medical information
- Record all your symptoms and record your vital signs
- Decide if additional testing is needed before making a diagnosis; this may include testing to rule out other conditions (laboratory testing, in-office testing, physical exam, etc.)
- Assess test results and give you a diagnosis
- Once diagnosed, assess if further testing is required such as imaging, scans, laboratory testing, physical exams, etc.
- Discuss treatment options (drugs, therapies, clinical trials, etc.)
- Discuss prognosis (quality of life, life span, hospice, etc.)
- Discuss follow-up testing, treatment options, office visits, etc.
A big challenge for the doctor-patient relationship is misinformation. Don’t get caught up in conspiracies, false claims, or quick fixes. Remember that being a doctor is just like any other job. That job has rules or guidelines just like any other. If you want to understand more about clinical guidelines3, see this link.
Empower
Power struggles are a reality of life. When we’re unhappy with our doctor, we need access to something like medicine, medical services, or medical treatments. You might even get upset because your doctor acts as the gatekeeper for these medical products and services. But remember, doctors have the training to understand the risks and benefits of these things so, they also take responsibility or liability when things go wrong (e.g., malpractice).
By far, the advice given to resolve a doctor-patient conflict involves seeking out another doctor, clinic, or hospital that aligns with your values. But honestly, I haven’t found this helpful in my own life because it’s not always easy to carry out in practice: What if you can’t change doctors, or what if you’re limited to a certain clinic or hospital group by your insurance? So where do you turn when you are not happy?
In situations where you need to work with a specific hospital or doctor, my advice is to empower yourself with the best clinical guidelines for your diagnosis. Back up your thoughts and decisions with the same guidelines that other doctors use before negotiating with your own doctor. And yes, this is a negotiation, so it’s important to understand the rules of engagement.
Medical Guidelines
Medical guidelines specific to your condition or diagnosis may be published by government agencies, medical institutions, or third-party professional organizations. These guidelines frame your doctor’s decision when making medical diagnoses or recommending treatment options. These guidelines also guide your insurance company in deciding on coverage for medical treatments. These guidelines are key to negotiating what you want in the medical world.
Notice that I said, “may be published”? Be aware that some medical conditions don’t have universally accepted guidelines. So depending on the country you live in, there may be a guideline for your condition that is accepted. Even if your condition does not have an accepted guideline, there’s often a guideline published by a professional organization or another country that can help you before speaking with your doctor. If you can’t find the right guide, just ask your doctor what guideline(s) they are using when making decisions about your health!
In my experience, learning about the current guidelines will drive the best decision. This means keeping an open mind, being willing to speak with other physicians that can weigh in, and reading up on your condition. Remember that your doctor is a person and has a job. If you educate yourself and align your decisions with the rules of your doctor’s job (current clinical guidelines), your doctor will likely cheer you on.
Okay, I’m still stuck, so now what! If you hit a wall, your last option is the hospital or clinic administration (unless your doctor is in a solo private practice, then you must find another physician). Today, there is usually an administration behind the office to turn to when you are not being heard. The SBI (situation, behavior, impact) feedback model helps determine intent during conflict and is the most useful tool I learned working in the private sector. The model helps you describe your concerns in a healthy way while asking questions to understand where the other person is coming from. As I mentioned, it’s a negotiation, so better communication will enhance the doctor-patient relationship to create better healthcare decisions.
Engage
Did you know you’re probably an e-patient already? You’ve likely logged into your patient portal or used Google to locate a doctor or hospital website. If so, you’re already engaging as an e-patient! As an e-patient, can you do more? Yes! You can join the Society to Improve Diagnosis in Medicine4, the Society for Participatory Medicine5, or follow an e-patient blog6. If you’re engaging on this site, you’re already doing more!
You can blog about your disease, or join an online group or professional society for your condition. With endless ways to connect with others online about your medical condition, engaging as an e-patient is simple. So keep learning about your health as an e-patient and discuss what you learn with your doctor to make the best healthcare decisions for you!
- https://altarum.org/sites/default/files/uploaded-related-files/CCCHC_Survey_Extended_Report_123011.pdf
- Frankel, R., Peyser, A., Farner, K. Rabin, J.M., Healing by Leaps and Gowns: A Novel Patient Gowning System to the Rescue; Journal of Patient Experience; (2021) Vol 8: 1-7; DOI:10.1177/23743735211033152
- https://www.ahrq.gov/research/publications/search.html
- https://www.improvediagnosis.org/patientresources
- https://participatorymedicine.org
- https://www.epatientdave.com
By Doc R
