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.


The Insulin Crisis in America

May 16, 2017

Diabetes Blog Week continues with the topic for Tuesday being The Cost of a Chronic Illness:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

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Net Neutrality and Healthcare

April 6, 2017

It seems to me that no one in the healthcare world and particular patient advocacy is paying attention to net neutrality. Perhaps this is because net neutrality is a newer concept and potentially confuses many. But, the future of net neutrality will have a significant impact on healthcare, particularly as we focus on digitalizing the industry – from apps to manage our health to medical records to simply being able to search for information on our conditions. Much like many were not paying attention to the implications of the recently signed into law provisions that allow our internet service providers to sell our data until it was passed, this is something we cannot let slip under the radar.

So here’s a brief primer on net neutrality basics, why it matters in healthcare, and actions currently being taken to end net neutrality.

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