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5 Tips to Help You Become a Partner With Your Doctor in Your Health Care

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The internet has changed our world exponentially. Information is a click or tweet away. Mobile phone apps help how we organize and access this information. The media and publishing industry has evolved to allow more opportunities to self-publish and establish credibility as an author. But in this day and age, it’s understandable why doctors may be skeptical when a patient enters an appointment with a diagnosis from information researched and obtained from the internet. 

Although they may respond in a way that seems dismissive, the concern they have is valid and is centered around the safety of internet-based research and the potential to self-treat and diagnose.  

As a patient with a rare and chronic medical condition, I’ve learned the importance
of medical research and keeping detailed records through a symptom journal. Through careful research, I was able to collaborate with my physician. This partnership resulted in my uncommon medical diagnosis. It’s my hope that all patients can reach a place where they feel comfortable and valued when bringing medical concerns forward in appointments. The following five tips will help in accomplishing this goal:

1. Online support groups and chatrooms are all good resources, but some may rely on subjective and opinion-based resources. Doctors are trained to apply science and clinical training when assessing medical conditions. They rely on lab work, imaging studies and clinical suspicion. Information obtained on the internet that is not factual may cause them to be dismissive. 

They are in a profession where there is a great deal of liability, so they have to be cautious on where they accept information from. It’s OK to Google if you are being attentive about your subject. For example, if I am researching childhood cancer, I would want to focus my topic on medical journals or abstracts regarding childhood cancer. It’s equally important to pay attention to the results the search engine generates and to make sure it’s from a published medical journal or abstract.

2. Ask your physician to send you medical journals and research on your medical condition. If you’re in the process of obtaining a diagnosis, ask them to send you their research. This will ensure you’re getting the most current and accurate medical information. It also lets your doctor know that you’re invested in learning and managing your health.

Additionally, it’s a way for you to see if your doctor is willing to partner with you as well as invest the time needed to manage your care. Often, complicated medical conditions require a physician who is willing to put the time into researching. If they’re not willing to research or obtain additional training on your condition, this could serve as a red flag and you may want to seek care with another physician. 

3. Get familiar with top online resources. The National Institutes of Health (NIH) is a leading medical research agency and a division of the U.S. Department of Health and Human Services. Abstracts on NIH’s website are held in high regard by the medical community. The Centers for Disease Control and Prevention (CDC) also provides good research on disease and infection information. The Department of Public Health is another good resource.  

There are also many nonprofit organizations and patient advocacy groups that can put you in contact with reputable information and resources. For example, a patient with a primary immune deficiency can contact Immune Deficiency Foundation. Or a family caring for a child with autism could contact Autism Speaks for area-based information and resources.

4. Utilize social media as a resource. Physicians are realizing there is a need for accurate medical information. After conversations with my physicians, they created Twitter accounts so accurate medical information could be accessed by their patients.

But we do live in a world where anyone can create a Twitter account, so it’s important to take some extra time to do research to ensure the credibility of the information you’re accessing. 

If you see physicians who are engaged on social media, ask them if there are any other good medical colleagues you could also follow. These connections will help ensure that you’re following reputable sources, and it will also give you access to emerging medical information. 

5. Keep a symptom journal. I think it’s normal as a patient to feel nervous about discussing research you have done on your medical condition. You may feel that the doctor is the expert, and you may uncomfortable to step on their toes with your thoughts and ideas. Or if your symptoms are uncommon, there may be self-doubt in opening up to a doctor about what you are experiencing. 

Since my disease is uncommon and there wasn’t much information about my condition, I felt uncomfortable mentioning things to my doctor, since I wasn’t sure what published research there was about it.

But keeping a journal of my symptoms and medications helped me to understand my disease. It also gave all of the doctors the same information, so I was consistent in my communication from one appointment to the next. 

For these tips to be helpful, it’s really important to keep open lines of communication between your and your physician. It’s my hope that in employing the strategies above that you can become a partner with your physician in your health care. 

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Originally published: November 16, 2016
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