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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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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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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Healthcare Does Not Have a Problem With Silos

August 3, 2017

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.

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Housing is a Human Right

July 30, 2017

A year ago, through the kindness of a friend, I finally got a home.  I moved into a one-bedroom apartment with my cats in a quiet neighborhood after a year of homelessness.  And in this year, I have been able to heal and find myself again.

We talk about social determinants of health, but I think few people really understand how impactful they truly are, particularly housing.

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The Research Loop – My New Endeavor

June 26, 2017

Just minutes ago I went live with my new endeavor, The Research Loop.  Quite simply, it’s a website where patients and caregivers who have read a research article can submit feedback to researchers.  It’s an idea that I hope will elevate the patient and caregiver voice in research and transform the research process and synergistically enhance initiatives that already exist to include patients and caregivers in research.

If you want to learn all the ins and outs of The Research Loop you can head on over to the page and explore the site.  In addition to the feedback forms, I’ve posted resources and educational materials to help patients and caregivers better understand research and how they can get involved.  I’ve also written a white paper which you can download here: The Research Loop: Transforming the Research Process.

But I’d like to tell you here a bit more about the story behind The Research Loop.

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The Evolution of a Blog

June 7, 2017

I published my first post on March 24, 2011.  I wrote about Patient Centered Medical Homes and I thought I would write a professional blog about health as a human right – about law and policy and human rights.  I thought there would be some focus to it, but I quickly realized there couldn’t be.  That’s not who I am.

For those who read my blog, I ask one thing implicitly:

See the bigger picture. 

I haven’t stated that outright but as I’ve wound my way through various topics, becoming ever more personal, I hope that some might see that there is a bigger picture in all of it.  That it does all connect at some level.  There is an underlying theme, even if hard to see at times – one that is at its core, a reiteration that health is a human right.

It makes me laugh knowing that my most read post is The Cruelty of Restraints.  And my second most read post is Don’t Eat Armadillos.  Fewer topics could seem farther apart in the realm of health, health policy, health law, human rights, advocacy, etc.  But they both exist on this blog.

Over the years my posts have become ever more personal and they likely will continue to.  I do hope to address some of the wider issues as I started and as are peppered throughout.  But I’m no longer afraid to write my reality.  It’s not pretty or professional.  It may not be meaningful to many.  It may just be more noise on the vast internet.  It may just be my tiny voice and one day I’ll look back and be mortified at the musings of my younger self.   For now though I will continue to write in the hope that the words might connect with someone somewhere – however naïve that idea might be.

This blog has evolved and will continue to.  I cannot set boundaries on what it is or what it should be.  I hope you will accept it wherever it goes.