Appointment Primer

October 27, 2017

I just posted my Personal Health Record (PHR) Template.  I bring in a PHR for my doctors to have my health history but I realized I also needed to bring in a one-pager to really focus on the issues I’m presenting with.  I just started using this format but am finding it really helpful.  I’ve posted below the primer I took to my foot surgeon yesterday (I have removed some personal information).  With this document in hand, we are able to really get down to the issues at hand.

The first side of the page is the important issue for the appointment.  But I put more on the back side – the things that help a provider see me as a whole person.  I have my coordination of care notes but more importantly, I put a “brag list” or a list of things that are good in my life – the things that I want a provider to know about me as a person – not a patient.  I want to give them a sense of why I’m there.  It’s not just about the pain, but about what I want to get back to doing and living a fuller life.

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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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The Burden of Disease

October 9, 2017

The burden of disease.

The cost to society.

That is how my life is measured – in dollars and cents.

It plays out in the news and health policy with sensational headlines like: The High Price of Failing America’s Costliest Patients.

And every time I see such a headline, it makes me feel like I am a drain on society.  I am a burden.  My very existence costs society, a detriment to society by these measures.

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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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I won’t live my life in the shadows

September 28, 2017

I wrote a tweet thread today but I think it’s important to post here too.  Each tweet starts with ♦.  And while the thoughts connect, they should stand alone as well.

There is a lot of pain in these words. Please have compassion.

September 27, 2017

♦ Re-upping this post after today: This stuff is not okay.

My Post: My Abuser Found Me Online

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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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