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 »


I Am Them

September 6, 2014

My friend Carolyn Thomas posted an open letter I wrote on her website Heart Sisters.  As a result, Medicine X asked me to participate in their conference this year and presented my reading a shorter version – video below.

“Dear Medicine X Conference organizers, Read the rest of this entry »


Four HIPAA Violations

April 8, 2014

*Nothing below is meant to be considered as legal advice.

As a lawyer I focus on HIPAA (the Health Insurance Portability and Accountability Act).  I’ve written about HIPAA in cloud based computing for IBM, I’ve trained providers as to how to be compliant, I’ve audited technology companies for compliance, I’ve blogged on Privacy Questions.  Most providers I see do not realize this.  Thus it is somewhat ironic when I encounter a HIPAA violation as a patient.  And recently, I’ve encountered no less than 4 HIPAA violations in the last 4 months. Violations of disclosing hospital records, security of patient portals, text messaging, and marketing.

In short, HIPAA consists in part of the Privacy and Security Rules.  These rules give patients protections as to how their information is used, stored, and disclosed.  These rules were updated last year under the HITECH (Health Information Technology for Economic and Clinical Health) which strengthened these provisions, breach notification laws, and penalties for violation.

Health and Human Services currently lists 931 breaches that have affected 30.6 million people.  But these are mainly before the new HITECH rules came out which are stricter.  Most people hear about HIPAA breaches when a provider has lost an unencrypted computer or flash drive containing patient information.  But violations are not just losing information.  They include the ones I have encountered below. Read the rest of this entry »


Not Meant to Be

March 13, 2014

I don’t believe in the phrase “it was meant to be” or “this is all happening for a reason” because I can’t believe that people are meant to be hurt.  I can’t believe that children are meant to starve to death or women abused.  I do think that when something happens, even though it’s not meant to be, we have an opportunity to create change.

If you follow me on twitter you will see that I’ve been tweeting a lot about my experience with St. David’s HealthCare.  I have never seen or experienced so many medical errors and medical record errors in one person’s case.  What astonishes me aren’t the individual errors alone but the number of errors – a true systems failure where there were inexcusable errors at every single point of care.  Honestly, it is amazing that I am physically okay considering the errors made – the potential that I could have died.  But the mental recovery is ongoing as I process my personal experience and consider how to use the opportunity to ask for change in the medical system. Read the rest of this entry »