It is Okay to Be Angry

February 2, 2018

Anger in healthcare is often justified though usually disparaged.  It is an emotion that is considered “negative” and “uncivil.” In a culture still stuck on positivity and “choosing to be happy” it’s an emotion that is shunned.  People turn away from anger, afraid or disgusted by this unruly emotion. But perhaps we should turn into anger if we really want to change healthcare.

Anger is rightfully feared. Anger can lead to rage. Anger can hurt others. Anger can destroy.

Anger is often suppressed held in until it boils over, erupting and affecting everyone in its wake.

Anger is not pretty.  Anger is hard to confront – no one wants to look directly at it.

Yet anger, like any emotion, needs to be expressed.  Anger is real and valid just as sadness or happiness.

It is okay to be angry.

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Sacrifices and Ripple Effects

January 15, 2018

I have had many a terse conversation with doctors about the sacrifices they make to medicine – all they give to take care of patients.  I recognize and respect their sacrifices, sacrifices of time, energy, mental health.  The suicide rates for doctors is a crisis in itself as highlighted in this recent post in the Washington Post – “What I’ve learned from my tally of 757 doctor suicides.” The effects of the sacrifices that doctors make to the profession are real, but they aren’t the only ones who sacrifice.

There are ripple effects.

There are consequences for those immersed in medicine, surrounded by it.  For those of us who are not doctors whose lives are intricately linked to this profession that can both hurt and heal in the most profound ways.

When I have these discussions with doctors, they have no idea what I’ve sacrificed.  I haven’t been able to talk about it before in more than obscure references.  But now I can and I think what I have might be worth saying both to understand my advocacy better and perhaps, even more importantly, help doctors gain another view of medicine – one that holds compassion for their lives and also asks for acknowledgment of ours.

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The 4 Stages of Treating Me

January 9, 2018

There are 4 stages to treating me:

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Personal Health Record Template

October 27, 2017

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).

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Letter to Providers on Using Email

October 27, 2017

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.

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Stigma and Borderline Personality Disorder

September 29, 2017

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.

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HIPAA and Trust

August 31, 2017

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.[1] (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.

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