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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Why you should pause before posting your blood sugars

July 23, 2017

At least once a day a picture of someone’s blood glucose meter reading or continuous glucose meter (cgm) graph or posting of someone’s HbA1c comes across my twitter feed.  All by well-meaning diabetics who are trying to share their experiences – for support, to relay information, to pat themselves on the back for the very hard work that is the life of someone with type 1.  But I am asking them and all diabetics to please pause before posting your blood sugars.

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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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I’m Giving Up on Patient Portals

August 18, 2016

I’m giving up on patient portals.

I asked my doctors to deactivate my accounts and I’m sticking to email.

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Have you considered?

June 8, 2016

Three doctors have now fired me following the message I sent to all my providers.  I honestly am not completely surprised though I am deeply disappointed. I think that we can do better than this in healthcare.  I think patients deserve better.

However, I’m not sure that the doctors I’ve written understand how I came to the decision to write them all as I have been asked “have you considered…?” on more than one occasion. And the answer each time I’ve been asked is, yes. Yes I did consider a number of things before pressing send.

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Systems Failures – wasting our time and wasting our lives

November 16, 2014

Please, stop wasting my time. Stop wasting my life.

– Jess Jacobs

So much of healthcare’s inefficiency is captured in a recent post by Jess Jacobs, a rare disease patient who, after a year of healthcare encounters (including continuing treatment for postural orthostatic tachycardia syndrome, a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions this year), took apart the value for time spent seeking care.  And her findings were eye-opening. Read the rest of this entry »