I have a lot of doctors. A lot of doctors. I’ve seen more than I can count and each time I go in, they ask me to fill out a new patient form. Inevitably, the form does not have enough space to include all of my information. And worse, I’ve already filled this form out in hundreds of other places. So I decided to make my own form – a personal health record (PHR).
I need to use email to work with my providers. I’ve explained before why I’ve given up on patient portals. Basically, I have multiple providers to manage (16) and going into multiple portals to send multiple messages is untenable for me as a patient and really does a disservice to me and to my providers. However, doctors are reticent to use email. The EHR vendors have done a great job with their marketing to scare physicians to think that they can only use the portal to communicate. But that’s not true! And in fact, patients have a right to use email, one that doctors must accommodate.
Because doctors don’t want to believe me despite my law degree, I have written this letter and present it when they try to resist the use of email. Some still try to push back and refuse, but the law is in my favor and I’ll push for what I need to do for my care. We shouldn’t have to fight over this, but until doctors really learn how HIPAA works, I’ll have to educate them on my own.
For all patients that want to use email, feel free to use this. It is NOT legal advice, it is simply what I use as a patient and cites the relevant laws, rules, regulations, and guidelines.
Stigma against those with Borderline Personality Disorder (BPD) is endemic and rampant in the medical and mental health professionals. Such stigma is often expressed overtly as well as subtly to patients, impacting their care in dramatic ways.
This stigma needs to stop and it needs to start with not only the public but with providers of all kinds assessing their biases and misunderstandings of this illness and taking responsibility for their actions.
Here I present the research on the most pertinent research surrounding this issue.
The last line of my article on privacy and security in the cloud for IBM reads:
Ultimately, responsibility is important not only for HIPAA and HITECH compliance but also for ensuring trust. A doctor entrusts a BA with critical information shared by patients who have divulged their most intimate details and whose EPHI [electronic personal health information] might be stored in the cloud. If their EPHI is compromised, patients might lose trust in their doctors and consequently their care might be put at risk. Thus, the significance of HIPAA and HITECH goes beyond law. EPHI is not merely data; it represents individuals, their health, and their lives. (ital, bold added)
It’s not exactly the line you’d expect to see in a technology publication but it was important to me that the article end with the reason why HIPAA is important, a reason that is often forgotten or in the least neglected by providers tasked with following the law – trust.
The privacy and security provisions in HIPAA are ultimately about trust.
Healthcare does not have a problem with silos.
In fact, there are no silos in healthcare; there are only boundaries.
If we truly want to change healthcare, we need to break boundaries.
I’ve written 2 posts on communication this year. I’ve deleted both – the only two posts I’ve ever deleted thus far after over 6 years and 182 (soon to be 183) posts published on this site. The first I felt people weren’t ready to hear. The second didn’t feel true to myself. But I’m going to make a third attempt because in the past 9 months, the subject of communication persists, from politics to healthcare to social media and relationships, and weighs on me heavily.
This week was National Eating Disorders Awareness Week and so I thought it would be a perfect time to share my “Diabulimia Primer.” This is a document that I’ve crafted using the research on eating disorders in people with type 1 diabetes. I take it to every doctors appointment (even endocrinologists) to explain what this eating disorder is all about.
I first developed it because no provider I knew understood the disorder. So when they saw my extremely high blood sugars, instead of taking the time to understand what was behind them, they would judge me, threaten me, and give me lectures about how I would lose my limbs and die. Many didn’t believe me that insulin can cause weight gain and others still mistook me for someone with type 2 and would tell me I needed to lose weight. That only made things worse.
In time I’ve found more and more providers have at least heard of the concept but they don’t have a great grasp on what it means or how and why it develops. The document cites research because I know doctors won’t accept my word for it. And once they’ve read this primer, they often come to a new understanding and are able to better help me with my treatment.