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Find Out What I Know About Me: Improving Diagnosis through Patient Partnerships

Tuesday, June 05, 2018
Geri Lynn Baumblatt MA and David Andrews

David Andrews

David’s Story

22 years ago I experienced a surprising weakness in my legs. At first, I thought it was a back problem, but it turned out to be neurological. The neurologist said he would have to do some research to figure out exactly what it was. But beyond my immediate symptoms and my parent’s medical history, he didn’t really ask me many questions.


I tried to figure out my own diagnosis based on my symptoms, history, and family history. Many of the possibilities were genetic, so family history was important. Association sites for specific diseases are usually helpful, but I didn’t know what I had. So I sought out medical websites intended for physicians. While it’s written for physicians, I could understand enough to make good use of the articles.


One possibility was something called: Lytico-Bodig. It’s only found only on Guam. But I had spent a year and a half on Guam in my youth, where my father was the acting head of a new teacher’s college. However, Lytico-Bodig was confined to one village and was only acquired from the food they ate which was found to contain a neurotoxin. So even though I had been to that village many times, I had never eaten their food. I told my neurologist about Guam. But he just said he’d have to research, we’d have to rule it out, it and didn’t ask me more about it.


Based on my family history and the timing and circumstances of my first symptoms, I thought I probably had something called: CIDP (a rare autoimmune peripheral neuropathy). There were 3 categories of treatments. And based on effectiveness research and side effects data, I had some thoughts on which treatment I’d prefer.


At our next meeting I told the neurologist my thoughts on CIDP.  He said, “No, no, there are hundreds of things that can cause your symptoms and we have to eliminate all of them.”  For the next several months that’s exactly what he did -- including testing for many conditions a second time.


I was referred to another neurologist with more expertise in my type of problem for a second opinion. He explained that some of the diagnostic tests can vary considerably depending on who does them. So he also repeated many of the tests, which took 2 more months. He added one (a biopsy of a nerve in the foot). And that biopsy confirmed my suspicion: that it was CIDP. So I finally began the treatment.


Unfortunately, the treatment only slows the progression of CIDP, it doesn’t reverse or treat existing symptoms. So the slow time to treat was time I couldn’t make up.


Of course, I could have been wrong -- patients often are.  But the physicians made little effort to learn what I knew about me.


How can we make patients and family members more effective contributors to the diagnostic team?

In David’s case -- there were clues that could have saved time and expense in reaching a diagnosis:

•       Family history beyond just his parents

•       Potentially relevant behaviors or trips abroad

•       The pattern of onset of symptoms

•       Major stressors in the weeks and months before onset


David tried to volunteer some of this information. And he was both motivated and able to make his way through some of the medical literature. But even as an engaged patient, he felt dismissed.  As though he should wait on the sidelines while tests were run.


Of course, there’s a continuum of patients: some want to show up and have the doctor figure out the problem and fix it. Others feel sure they know the problem and get frustrated when the doctor doesn’t seem interested in what they know. Regardless of where people are on the continuum, everyone needs to know their knowledge and participation is valuable and could contain important clues:

     What do you think might have caused this problem?

     What do you think you have?

     Did anything change in your diet, environment, or life before this started?

     Other than physical symptoms, has anything else changed?


How do you find out what your patients know about themselves that they don’t think to tell you?

Patients have critical information that can contribute to a more efficient and accurate diagnosis. The health care team’s can draw the patient and family into an active role and make sure they know and feel like part of the diagnostic team. Diagnosis can improve, be more timely, and everyone will feel a greater satisfaction that comes with a team working together.


Share your diagnostic success stories as you’ve partnered with patients to sleuth out what they have.


Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

David Andrews has been a patient advisor for over 13 years: the first 10+ with Medical College of Georgia (now Augusta University Medical Center) and the last 6+ working with many regional and national healthcare organizations.  He’s currently co-chair of The Beryl Institute Global PFAC.  He has a long, varied and colorful medical history including physicians not interested in what he knows about himself, his symptoms and history. @dandrews324

Tags: employee engagement, patient education, experience, listening, patient
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