California 2011-12 Assembly Bill 2253 – Could it end the prohibition of sharing certain test results online with patients?


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California 2011-12 Assembly Bill 2253 – Version 99 -

Existing law authorizes the results of a clinical laboratory test performed at the request of a health care professional to be conveyed to the patient in electronic form if requested by the patient and if deemed most appropriate by the health care professional, except that existing law prohibits the conveyance by Internet posting or other electronic means of test results relating to HIV antibodies, the presence of hepatitis antigens, and the abuse of drugs, and specified test results that reveal a malignancy. This bill would authorize the conveyance by Internet posting or other electronic means of clinical laboratory test results related to HIV antibodies, the presence of hepatitis antigens, and the abuse of drugs, and specified test results that reveal a malignancy if requested by the patient, the means of conveyance is deemed most appropriate by the health care professional, and a health care professional has already discussed the results with the patient.

My understanding is that this is a partial repeal or modification of California Health and Safety Code Section123148, which currently forbids physicians from sharing certain types of test results with patients online. That law has been in place since 2002, and I’ve written about it more than a few times on this blog. See: “What on earth is the rationale there?” : Prohibition on sharing test results with patients online in California | Ted Eytan, MD for a little discussion of this. That post is from 2009, so change has been slow.

I recommend taking a look at this and seeing if the proposed changes are more patient friendly, or if they go far enough to allow patients to see their health data online. I’m not a California resident or a legislative expert, so comments are welcome (they would be even if I was :) ).

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ePatientDave
ePatientDave

On e-patients.net, RedFeatherRox provided a chilling anecdote that I think demonstrates that the law as written formalizes a gaping crack, into which she fell.  I hope Rep. Pan can take this into account, because I'm sure it wasn't intended.  I'm re-posting her comment here with permission:

_______

 

I believe that having delivery of results online is imperative for the patient. My story is cringe-worthy – even in this electronic world we live in.

 

My pathology results were delivered by email and by fax to my doctor’s office where they were promptly *lost/misplaced/never received/still waiting for* despite the fact an electronic receipt was identified by the sending institution.

 

After waiting many weeks (and after many calls by me to various facilities), the results were re-sent to my physician (his office did not even know they were lost until I called to ask for them). His nurse read the results over the phone to me and told me my biopsy was negative.

 

Six weeks after that phone call with my physician’s nurse, the hospital that performed the biopsy was calling me wondering why I never showed up for my follow-up appointment with the oncologist since my results were positive. Had I received my results directly and online, I would not have had to wait almost 3 months to begin the surgical and treatment process.

 

So, in view of this post, I would likely be dead today if I lived in California and this bill went into full effect.

 

I am the trifecta of healthcare folly with this bill:

 

1) the healthcare professional couldn’t deem online delivery since they lost my results from the get go

2) I had a malignancy

3) they couldn’t have discussed them with me first before posting online since they lost them (and didn’t know they had lost them!)

 

I don’t know if I am the exception rather than the rule but there must I think there should be some way to provide an *opt in* clause for the patient who wants online access to their results perhaps with a *rules of engagement* agreement to be adhered to.

 

In my case (and likely in others too), we would gladly sign a waiver of some sort to get online access. When this wee adventure happened to me, I spun into action and went and collected all my medical documentation from the records dept. I signed a few *release of information* and *consent* forms releasing the facility who gave me the documents from any *legal/security/privacy* issues so perhaps this is what is needed to give lawmakers (and doctors) peace of mind with online delivery.

 

Hope this makes sense.

 

Ted Eytan
Ted Eytan moderator

 @ePatientDave Hey Dave,

Thanks for posting this. I do not think this is the exception, as I've cited studies here that show that 7% of abnormal lab test results are not reported to patients. This story is very important and compelling. If we believed that 100% of the time, lab results were reported to patients and they understood why they were ordered and resulted accurately, maybe there wouldn't be a need to share them. But this is not the case.

 

I wonder if there is a case to be made for repealing section F entirely - do you really think patients should have to be in a position to opt -in? Why should there be any barrier? Curious as to your thoughts,

 

Ted

ePatientDave
ePatientDave

 @tedeytan > do you really think patients should have to be in a position to opt -in? 

 

My reputation is not false :-) ... my mantra is "Gimme my damn data." My view is that assets ought to be under the control of - and certainly *accessible to* - the people who have the most to win or lose from the proper use of the asset. To me that's "the ultimate stakeholder," and in this case that's clearly the patient.

I do, though, try to see things from others' point of view. So as I said, it seems clear that the perspective of that law-writer must be paternalism: the idea that a weaker, less sophisticated party must be protected from something that might harm them. In this case, though, as RedFeatherRox's story illustrates, there's actually harm from NOT giving them the information.

I often liken it to how financial information has handled fifty years ago, when people in the business honestly believed the public couldn't understand it. Indeed, when a pile of raw data was printed out on greenbar computer paper, it was incomprehensible. The first life insurance printout I got was impossible to understand without special training.

Today, of course, financial analysts and investment companies compete on how CLEAR their *software* makes the information that's hiding in the data, and consumers can vote with their feet, ditching a company whose charts make no sense. I can clearly see a future where our health information is presented that clearly and graciously.

In any case, today we don't have that software, AND as RedFeather's story shows, the custodians of our data do not have reliable workflows in place. We must have our data - our family's data - in self-defense.

redfeatherrox
redfeatherrox

 @tedeytan  @s4pm 

Hi Ted and Dave,

 

As you say, it is so important to raise awareness and this discourse will help distill the collection of issues that need to be addressed.

 

Access is one key point and the bill will have huge impact on that ability.  It would be interesting to understand the drivers for tooling the bill in this manner.  Could this really be in the best interests of a patient's health and safety (i.e. California Health and Safety Code Section 123148)?  Is it really about online security concerns?  Is it about proper (or improper ) context of the medical information when read without a physician present? Perhaps the reps behind the re-tool can enlighten us as to their motivation. 

 

Dave, your comments on clarity of data presentation represent a second major point - it is fundamental to our mission to engage people with their healthcare.  So many of the folks in my patient help group struggle with comprehension of the records presented to them by their healthcare practitioners.

 

Unfortunately, the clinicians don't have the time during a patient visit to help demystify the content either.  Further, many in the group (includes US citizens) stated they felt their physicians purposefully kept their records away from them thinking access would result in more patient management (read: too many additional questions to answer).  I have heard far too many times physicians have told patients *now don't you go searching about your condition on the internet!*

 

Whether we target the EMR vendors themselves or perhaps the source Reporting tools (i.e. Pathology, Lab, Radiology),  the sweet spot would be to make the content engage-able for the patient, while not loosing the important detail that the doctors need.  I have seen medical reports out there that do a great job of reporting clinical information (the newer consumer genetics testing companies have good clinical information delivery models). 

 

In the end, I think it will be the successive small victories that will forge our patient engagement path.  Whether those victories are at the state-by-state legislative level or with the vendors themselves, I think your point is well-taken Ted - who wouldn't win?

 

redfeathrrox

 

 

Ted Eytan
Ted Eytan moderator

 @ePatientDave Hey Dave,

 

Thank you for this perspective it's really important.

 

My reason, and worry, for writing this post, is that I'm not sure patients realize how much this law has impacted the last 10 years of patient access to their data. It has been significant - unlawful to share pap-smear test results or any biopsy results online, for example - ask any Californian if they've seen these test results on the web...

 

To prevent another 10 years of loss, I wanted to raise awareness. The people who will lose if restrictions from communicating remain in place is patients and physicians (who would win if it passes? I'm not sure...)

 

If @s4pm wanted to engage in something that made a difference for a lot of patients, I would look very closely at this, and of course I offer my support,

 

Ted

redfeatherrox
redfeatherrox

 @ePatientDave 

 

Thank you for posting Dave!

 

While my story is rather frightening, it knows no borders or continental boundaries.

I am Canadian and this story happened in Canada.  As you would agree, this is not about which country has better healthcare.  Beyond this experience, the medical care I received was fantastic (and free - but that discussion is a whole-other-Oprah :)

 

However, regardless of nationality, a message lies in the experience I encountered.  I know there are others out there, US citizens and beyond, that have experienced at least one of the sub-plots in my story.  

 

You are so right.  I don't believe it was intended - but - it did happen.  If legislation like this is going to exist (or is being proposed to exist), my story has relevance as it has the possibility to be any patient's story.  Just as easy as it happened to me - it could happen to anyone . . . anywhere. 

 

I am currently in the process of working through our political ladder here in the North to understand what can be done to prevent this situation from happening again.  What checks and balances can be put in place.  One of those balances is online distribution of results to patients.

 

Again, regardless of the geography involved, the base message is the same: using IT/technology to assist in the deliver of patient care - which includes timely notification and delivery of test results.  

 

Hope this makes sense.

 

 

Alexandra Yperifanos
Alexandra Yperifanos

This doesn't seem 'so' patient friendly to me nor do I believe it improves receiving effective care. The idea that results can only be emailed "...if deemed most appropriate by the health care professional … " OR "...a health care professional has already discussed the results with the patient.” still keeps the necessary information with the doctor far longer than I would like it to be. I want the fastest delivery possible of my results, so I can make informed decisions for myself from that point. In my experience, if I do not call, sometimes over and over again, only in rare cases have I received my results in a timely manner. As stated, this still feels too restrictive to me. Onwards and in hope for improvement in this regard.

Ted Eytan
Ted Eytan moderator

 @Alexandra Yperifanos Totally agree, thanks for commenting, I have never been in favor of this law as a physician, I think it actually creates more harm in the testing process,

 

Ted

healthblawg
healthblawg

I believe that the draft HIPAA and CLIA regulation revisions released last fall by the federales will trump the provisions of this bill, if the regs are finalized as originally proposed.  It could be several more months before that happens.  See: Lab Results for All! Of Data Liberation, Participatory Medicine, and Government 2.0 | e-Patients.net  http://j.mp/NHoojz

Ted Eytan
Ted Eytan moderator

 @healthblawg David, Are you sure about that? This law was passed in 2002, it is guiding the current design and operation of patient portals today. If it was known that the HIPAA CLIA changes would trump this, why would any effort be made to revise it at all? Can you take a closer look, please? Thanks, Ted

ePatientDave
ePatientDave like.author.displayName 1 Like

In times like this (anytime I read a law), I gag and regurgitate the long blocks into bulletized things I can absorb.

 

I did that in <a href="http://e-patients.net/archives/2012/07/does-this-proposed-law-take-give-us-our-data-far-enough.html">my post about this</a>, and when I did, I was stunned. All this law seems to do is remove the bizarre exclusion of certain results from online delivery; but it <i>adds</i> a new requirement that before you deliver the results online you have to deliver them offline, first.

 

What are they thinking??

 

I guess I know what they're thinking; paternalism: "You can't handle the truth" mixed with the clause that it's still 100% up to the doctor. Except then they disregard the doctor's wish: even if the patient requests and the doc agrees, the doc still isn't allowed to deliver the results online first.

 

It's absurd: The very idea of a law that would prevent Dr. Danny Sands from telling me something, based on his deep knowledge of me as a long-time patient.... it's absurd.

 

And don't anyone gimme a "But you're unusual." This law would still <i>prohibit</i> it.

 

My view: In the patient community we have enough trouble already gaining recognition for the achievements of accomplished patients, in partnership with their clinicians. The last thing we need is a law that thinks it knows better than either of us.

 

ePatientDave
ePatientDave

Um, why does this thing not like basic HTML? I must not be understanding something.

Ted Eytan
Ted Eytan moderator

@ePatientDave Hey Dave, I think it escapes out HTML for security. I'll check it out. In the meantime thanks for reading and commenting. It takes a patient to explain what this means, Ted