TEFCA will succeed where previous national health information exchange efforts have failed only if it puts patients’ and families’, and/or their fiduciary agents, in control of health technology. This is the only path to restore trust in physicians, and to ensure accurate and complete data for treatment and research.
As physicians and patient advocates, we seek a longitudinal health record, patient-centered in the sense of being independent of any particular institution. An independent health record is also essential to enhancing competition and innovation for health services. TEFCA Draft 2 is the latest in a decade of starts down the path to an independent longitudinal health record, but it still fails to deal with the problems of consent, patient matching, and regulatory capture essential for a national-scale network. Our comments on regulatory capture will be filed separately.
We strongly support the importance in Draft 2 of Open APIs, Push, and a relationship locator service. We also strongly support expanding the scope to a wider range of data sources, beyond just HIPAA covered entities in order to better serve the real-world needs of patients and families.
However, Draft 2 still includes design practices such as the lack of patient transparency, lack of informed consent, and a core design based on involuntary surveillance. This institution-centered design barely works at a community level and leaves out many key real-world participants. It is wishful thinking to believe that it will work with expanded participant scope and on a national scale.
Leonard Kish and Eric Topol recently argued eloquently for patient control of a lifetime health record, adding their voices to the calls for patient ownership of health records, building on the foundational notion that ownership is necessary in order to assert control because “possession is nine-tenths of the law.”
I certainly agree that patient control of data is of paramount importance, but I am not convinced that we need to take the leap to patient “ownership” of data, and I am not quite sure what that even means in this day and age — or how it really differs from the status quo.
I’m less worried about the name we use for the bundle of rights a patient has with respect to his or her health data than I am about the vehicle available to exercise those rights.Continue reading…
The essence of controlling Ebola is surveillance. To accept surveillance, the population must trust the system responsible for surveillance. That simple fact is as true in Liberia as it is in the US. The problem is that health care surveillance has been privatized and interoperability is at the mercy of commerce.
Today I listened to the JASON Task Force meeting. The two hours were dedicated to a review of their report to be presented next week at a joint HIT Committee Meeting.
The draft report is well worth reading. Today’s discussion was almost exclusively on Recommendations 1 and 6. I can paraphrase the main theme of the discussion as “Interoperability moves at the speed of commerce and the commercial interests are not in any particular hurry – what can we do about it?”
Health information technology in the US is all about commerce. In a market that is wasting $1 Trillion per year in unwarranted and overpriced services, interoperability and transparency are a risk. Public health does not pay the bills for EHR vendors or their hospital customers.
When it comes to the health care of a frail older person, families really need a good personal health record (PHR) system. So I am once again preparing to take a look at what’s available, in hopes of finding something that I can more confidently recommend to the families I work with. (To see what medical info I urge families to track, see this Geriatrics for Caregivers post.)
I have — yet again — met a family with reams of paper health records. On one hand, they’ve done very well: at our first visit they were able to show me labs, MRI results, and even some specialty consultations from last summer. They even had a hospital discharge summary, although unfortunately not the one from the most recent hospitalization.
And they’d taken steps to digitally organize, having scanned several key items, as well as created an online space providing shared access to their parent’s information.
So this is better than the situation I often encounter, which is that an elderly person has seen multiple outpatient doctors, has been hospitalized in a few different facilities, and no one has a copy of anything handy. (See why new elderly patients are a killer in primary care? If there is no data you fly blind, if there IS data it can take hours to review it.)
Still, there are clearly many ways a little well-designed technology could improve things for this family – and for the doctors trying to help them.
Here are the problems we have right now:
Hard to search the whole pile, whether on paper or via the family’s online repository of PDFs. These were not OCRed and searchable until I manually converted them with my own PDF editor, after which I had to upload them to the patient’s chart in my EMR. Now each file is text searchable (for me), but the pile still is not.
Cannot trend the labs. Figuring out what has happened to this patient’s key lab values over the past year has been very labor-intensive. This remains a problem once the lab data is uploaded to my EMR, because it’s still in PDFs which have to be looked at one at a time. Being the nerdy doc that I am, I’ve spent a fair bit of time creating a note that summarizes the key lab data over time. Ugh. Better than nothing but a far cry from being able to graph and trend the patient’s labs as needed.
Takes ongoing time and effort to get records from the hospitals and other involved doctors. Kudos to this family for being diligent and persistent in asking for copies of everything they can. But wow, it’s a lot of effort for them, and I can tell you that in my practice so far, I’ve generally had to expend a fair amount of energy repeatedly asking for information from other providers. (And then I’ve had to try to organize all this info which comes in as scanned images via fax. Oy!)