What I Said – About Medicine X

First, I was Just Talking with my colleague this week about our experiences at Medicine X. There is a Clueless reference somewhere in our conversation, which causes my colleague to disclose something surprising. Listen.

In the weeks leading up to Medicine X, the ePatient scholarship recipients participated in video chats so that we could get to know each other a little bit better before the actual conference.

During one of the chats, I was asked to share about my experiences as a patient. That led to my participation on one of the panels during a break out session during the conference that included two doctors and a board member from the Society for Participatory Medicine. The panel was titled “Participatory medicine: A catalyst in reducing medical errors” and this is the story I shared.

I was quickly and easily misdiagnosed with Type 2 diabetes in the spring of 2002 by a doctor at urgent care. He prescribed medication that I didn’t need and referred me to my general practitioner for a follow up appointment. I don’t know if my general practitioner took the misdiagnosis for granted or just didn’t take the time or energy to investigate further but he continued with the error. At that point, instead of referring me to an appropriate doctor to manage my condition, conducting further (any) tests, or prescribing the correct medication, he simply took me off the incorrect medication and sent me on my way. He did not provide a single sentence of patient education to help me understand my emerging condition.

It was because of the misdiagnosis and the lack of education that I found myself back in his office about a year later, this time quite seriously ill. My doctor was busy that day and didn’t have time to see me. Instead I saw his physician’s assistant. Perhaps if he had seen me he would have recognized that I weighed in the double digits and was almost 40 pounds less than I had been only months before. He may have recognized that the self-tracking information I provided during that appointment indicated that there was something seriously wrong. He may have noticed how pale and gaunt my face was or that it took every ounce of energy that I had to even sit in the chair in his office. He may have noticed that I was short of breath or heard me describe the pain in my chest.

my panel at Medicine XI should have been admitted directly to the hospital. But again, the diagnosis was missed. Instead I was sent away with a post it note with a phone number on it, with instructions to call a different doctor to set up an appointment. This was on a Monday and the earliest appointment I could get with that doctor was for that Friday afternoon.

I ended up in the emergency room that Monday night. I still didn’t know what was wrong, but I knew something wasn’t right. Remarkably, only a few hours after I was admitted I finally had an accurate diagnosis. After diagnosing me, the doctor also shared that I would not have been alive to make it to that appointment on Friday.

So why do I tell you this whole story?

This all occurred about ten and a half years ago. I am no stranger to technology but throughout that period of misdiagnosis, not once did I even think to google the word diabetes.

It wasn’t until a few years later that even thought to do a web search for a question that I had related to diabetes.

That search helped me stumble upon a patient community. I found people like me. I found the answers to the questions I was having. I actually found that my story was not unique. People that don’t fit the stereotypical profile of people with diabetes are being misdiagnosed every day. They say when you hear hoofbeats think horse not zebra. I wasn’t a zebra. I was a horse with a stripe.

There were conversations yesterday [at the conference, during Chris’ panel] about firing your doctor. The worst doctor I fired was the one that walked into the room and started citing a study that did not apply to me and prescribed a medication that was not indicated by my lab work and was actually dangerous for me to take based on my blood pressure. Once I asked him to actually open my patient file, he realized his error.

part of my Medicine X panelI understand that I am not a doctor and I don’t even pretend to play one on TV. Despite all that has happened I still trust my doctors, but what is that phrase – trust but verify. Instead of going to the doctor and expecting him or her to tell me exactly what to do, I am armed at the appointment with a list of questions and concerns and make sure that I understand everything before leaving the appointment.

I think the patients in the diabetes online community are good at self-policing and not providing medical advice. We will however suggest that people visit their doctors and request certain tests or certain technologies.

I believe patients today are increasingly UNLIKE me from 10 years ago and do in fact search the internet for their disease when they pull out their phone in the parking lot as they leave the doctor’s office after diagnosis. They are going to find information about their condition but it is up to us to determine what they are actually going to find. If people are still routinely faced with errors in dealing with their conditions (and I encountered an error in medication at the pharmacy just last week), they also deserve to find patient communities telling them that they deserve better and showing them how to fight for it.

Since leaving Medicine X, I feel even more motivated to play a more active role in my medical care, especially related to my diabetes management. Medicine X brings together the best ideas from health care providers, entrepreneurs, and patients. The conversation empowers the other participants to think beyond their normal boundaries. But how do we take it beyond the walls of the conference? How do can the members of the diabetes community (both online and offline) be empowered to get the care and attention we deserve and what is my role in making it happen?

I applied for and was awarded a scholarship to attend Medicine X. These scholarships demonstrate the desire of Medicine X to incorporate patient participants in all levels of the discussion. I was not required to write about this conference, but as I shared with Chris in his podcast, I am a verbal processor so I need to “talk” about it somewhere.

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