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The Changing Physician-Patient Relationship Regarding Rare Or Chronic Diseases

Posted by | 4:16am on Wednesday, January 7, 2009

Scientific advances along with the prevalence of available information are causing the doctor/patient relationship to change, especially in the case of patients with rare or chronic diseases. 

Many people I knew when I was young believed everything the doctor told them as the last word in treatment. I had a slightly different experience as my own father was an MD and taught Medical School at Florida State University. As a teenager, meeting medical students at my home, I was under no illusion that doctors always had all the answers. In fact, it took me quite a long time (and several severe bouts with untreated strep throat) to realize that doctors can be VERY helpful in treating illness.

Well, things are changing now for everyone. Scientific advances along with the prevalence of available information are causing the doctor/patient relationship to change, especially in the case of patients with rare or chronic diseases.

With the explosion of new treatments and new diagnosis for more and more conditions, diseases that used to be life ending, not understood, or not treatable are now becoming chronic or treatable. But for many rarer conditions, patients and/or caregivers must educate themselves. For chronic diseases, patients must monitor their progress day by day, sometimes hour by hour. These patients are responsible for their care because a doctor can’t be. There is too much to know and to much to monitor on a routine basis.

Dr. Stanley Feld compares this to sports, in that physicians are coaches and patients are players. He explains that a system of mutual trust and confidence should exist for this relationship to flourish. It’s simple and it makes sense:

“If a relationship is positive with mutual respect and commitment by physicians and patients, patients can learn about the pathophysiology of their chronic disease. In turn they can learn to manage their disease properly.”

Why is this so important to understand, especially for patients with rare or chronic diseases?

It’s because chronic disease is a massive strain on the industry. The L.A. Times reports that up to 90%-plus of Medicare spending is going toward treating the complications of chronic disease. Plus, these are the patients responsible for checking their condition, keeping up with new clinical trials, learning about treatment options, and keeping diet and exercise a part of their daily routine. For patients with chronic disease, this never stops.

I know from my own experience with diabetes that the relationship between doctor and patient is essential and directly related to my treatment success. I was diagnosed with diabetes last summer and have been talking/reading/monitoring my disease since then. It is going well (last A1c was 5.9), for a chronic disease I feel kind of lucky that there really are things I can do to help make it better. My favorite “coaching” moment was when I mentioned to my doctor that I had read that I should exercise really hard at least three times a week. She responded, “I usually tell my patients that you only need to exercise on the days you eat.” For me that was a surprisingly helpful insight. It’s funny, but it’s also true and memorable.

I believe that the physician-patient relationship is a key to treatment success. As author Donna Jackson Nakazawa succinctly writes: “Health care professionals who offer up compassion…and a heartfelt prescription for hope facilitate better patient outcomes.”

Be sure to check out the e-Patients.net report to learn more about collaborative healthcare.

(Image courtesy of nutmeg via Flickr)

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

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