Engaged Patient

I am very excited to announce that this Wednesday I will be participating  in an engaged patient discussion with Virtually Connecting.

Virtual Connecting is an awesome group that started in the educational technology world, enabling people to participate in conferences virtually and synchronously- usually through quick discussions between people at the conference in person, and people who could not physically attend. I have participated with Virtual Connecting a few times already, which has really helped me to feel engaged in my scholarship and academic spheres. To say I am excited about Virtually Connecting spanning the chronic illness, constant patient part of my life too would be an understatement.

As I have mentioned in other posts, particularly this one, engaging patients in their medical care is incredibly important to me. Its something I have actually blogged surprisingly little about, care very deeply about, and constantly annoy my doctors with. 😉

I am definitely an engaged patient. It is my life, my health, and something I am actively going to play a role in- whether my medical professionals like it or not. I would love to see a medical system more conducive to medical teams than doctors handing down information and decisions to patients.

Anyway, space to participate live via Hangouts with the Virtual Connecting discussion is limited, but the session will be livestreamed – so anyone can watch along and participate in the discussion on twitter using #vcept. Let your voices be heard!

“The Healing Power of Your Own Medical Records”

This morning my mom shared a link with me to a New York Times article entitled “The Healing Power of Your Own Medical Records.”

The article describes a 26 year-old PhD student at M.I.T. who had access to his medical records and used them to push for treatment of a brain tumor. His graduate education and resources enabled him to research symptoms of his tumor growing, recognize them as they came to affect him, and push for further medical attention. The article then goes on to suggest the benefits of allowing patients access to their medical records- they can become more informed about their condition, and more complaint with treatments.

I find this article comes at a particularly apt time for me. I have diligently gone to all of my medical care providers and demanded a copy of my medical records. In some cases they give me the entire file, others they only give me the digital file. In one case, my doctor had to approve what she was willing to give me. Sometimes I have to pay for it, other times its free. At the end of the day I have the most complete collection of medical records I could gather (everything except my ophthalmological care- which I should collect and add to it). It lives in a binder that I bring with me to each and everyone of my medical appointments.

As you know, I am also a PhD student. I have a background in Animal Science and Reproductive Physiology. I have access to University research, and understand medical jargon. Plus I have rather impressive research skills. In my training as a graduate student I have been taught to collect all relevant data, analyze the data, integrate information, and provide thorough commentary. As such I have shown up to doctors appointments with printed copies of documents detailing how I’ve been feeling and information I think is important to my health care provided.

And yet all I’ve ever been met with is:

1. Evidence in my medical records that my doctors do not listen to me when I speak
2. Doctors who think I am over analyzing or “paying too much attention” to my health
3. Doctors who refuse to look at the binder of medical records I bring to them
4. Doctors who are only willing to give me the 15 minutes of a standard outpatient visit

Which leaves me feeling depressed, and I may go as far to say even traumatized each time I have a doctors appointment. I have anxiety about making doctors appointments, even though my pain is returning, and even though I am still certain there is something going on with me that is not being addressed and needs to be–something wrong–because I know I’m not going to listened to or treated like a patient who knows more about their own health than anyone else, let alone as a competent person- who has advanced degrees and clearly knows something about reproductive physiology, research, and making logically and critically sound decisions. Honestly, I avoid seeking out care because of this fear. Every time I think about making a new appointment the memories of the previous failed appointments re-surge. Its to the point now that I think I need to seek out psychological counseling to help manage it.

My point here is that having access to your medical records isn’t inherently healing. It actually can make things worse for a patient’s experience- serving as more evidence that they are not being heard. What would be healing is attentive medical professionals. What would be healing is medical professionals that actively listen. What would be healing is medical professionals that show they care about the patient as a whole- as a person and not just as a symptom or collection of symptoms, or someone who is taking up their time. What would be healing is being taken seriously by medical professionals as agents of our own health. I’m not denying that what the M.I.T. student was able to do with his records isn’t important- actually, I’m arguing that it is essential to good health care; but, it all comes down to the medical professionals. The M.I.T. student was incredibly lucky that his doctors took his research and experiences seriously and treated him as knowledgeable of his own condition; that they were willing to pursue his medical directives- and do so in a timely manner; that when he spoke about his condition and thoughts about the direction it was going, he was heard.

Apparently I am not that lucky.

And since I am also 26 and also a PhD student (actually one with more relevant degrees relative to the medical field), I have to wonder why it is that I am not being taken seriously.