Does this proposed law take “give us our data” far enough?

The ever-vigilant Ted Eytan MD writes:

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.

At issue is a bill in the California legislature to eliminate a blockage in online delivery of test results. At first blush it seems like a “Yesss!”, but when you slog through the language, here’s what it comes down to:

Current law:

…authorizes the results of a laboratory test … to be conveyed to the patient in electronic form …  if deemed most appropriate by the health care professional …

Huh? Only if the provider thinks it’s appropriate? Sounds like a great way for a provider to say “No, I think they need an office vi$it.”

In any case there’s an exception that forbids online delivery in these cases:

… existing law prohibits [online delivery] of test results relating to

  • HIV antibodies
  • the presence of hepatitis antigens
  • abuse of drugs
  • specified test results that reveal a malignancy.

I can see that these need to be handled sensitively; but, a law forbidding online delivery?? This time, regardless of what the provider thinks appropriate? Methinks the law doth speak out of both sides of its (opinionated) mouth.

Who wrote this??

ANYway, the new bill in the California legislature would change that – we think. But the question is, does it do it right? Specifically:

This bill would authorize [online delivery of those results] if

  • requested by the patient
  • [online delivery] is deemed most appropriate by the health care professional, and

… the corker – get ready for it – “and if…

  • a health care professional has already discussed the results with the patient.”

I do not get it.

What is this change accomplishing?  All they’re saying is that the previously excluded tests won’t be excluded anymore, but they’re adding a new condition: you can’t deliver it online until it’s been delivered offline.

My impression is that a major reason for online test results is because 7% of all results never get delivered, when they’re on paper (see here); and another biggie is the speed and convenience of delivery.

The proposed bill keeps in place the assumption that “doctor knows best in all cases,” yet overrides that by still requiring – by law – that the doctor must in every case discuss the results before delivering them electronically.

As I say, Ted asks that we opine on “if the proposed changes are more patient friendly, or if they go far enough to allow patients to see their health data online.” Please go to his site and opine, or comment here if you wish.

Try to compose your thoughts not just in terms of “patients’ rights,” but in terms of how each law might help or hinder effective care, as well as the patient’s and family’s rights.


Posted in: found on the net | policy issues




6 Responses to “Does this proposed law take “give us our data” far enough?”

  1. 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.

  2. Linda Carpenter says:

    I believe this bill originated with Assemblyman Richard Pan, 5th district, Davis/Sacto. I’m unable to find his reasons for the original bill, or if the bill in its current form is one he supports, or who, if not he, has made changes to this bill. Have you been in contact with Pan?

  3. Redfeatherrox says:

    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.

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