Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Wednesday, May 30, 2018

The New York Times Points Out How Useless The myHR Will Be For Serious Clinical Research.

This appeared a few days ago.

New Cancer Treatments Lie Hidden Under Mountains of Paperwork

May 21, 2018
Dr. Nikhil Wagle thought he had a brilliant idea to advance research and patient care.
Dr. Wagle, an oncologist at the Dana Farber Cancer Institute in Boston, and his colleagues would build a huge database that linked cancer patients’ medical records, treatments and outcomes with their genetic backgrounds and the genetics of their tumors.
The database would also include patients’ own experiences. How ill did they feel with the treatments? What was their quality of life? The database would find patterns that would tell doctors what treatment was best for each patient and what patients might expect.
The holdup, he thought, would be finding patients. Instead, the real impediment turned out to be gathering their medical records.
In the United States, there is no single format used by all providers, and hospitals have no incentive to make it easy to transfer records from one place to another. The medical records mess is hobbling research and impeding attempts to improve patient care.
“Data are trapped,” said Dr. Ned Sharpless, director of the National Cancer Institute. “This is a huge problem. It is phenomenally important.”
The cancer institute has invested millions of dollars into determining the genetic sequences of patients’ tumors, and researchers have found thousands of genes that seem to drive tumor growth.
But until patients’ medical records are linked to the genetic data, life-or-death questions cannot be answered.
“What drug did they get? Did they respond? Did they survive? Were they cured?” Dr. Sharpless asked.
The federal government has mandated uniform standards for electronic health records. “At this point, they are not to a level that helps with the detailed clinical data that we need for the scientific questions we want to ask,” Dr. Wagle said.
A few private companies are trying to tackle the problem. Flatiron Health, just bought by Roche, has obtained about 2.2 million records of cancer patients from medical centers and made them available for research after stripping them of identifiable information.
But Flatiron must employ 900 nurses and certified tumor registrars, people with master’s degrees in coding data, to put it all into a usable form.
“About 50 percent, if not more, of the critical details we need for research are trapped in unstructured documents,” said Dr. Amy Abernethy, the company’s chief medical officer.
“They are in PDFs. Maybe a doctor put in a note by hand, maybe a doctor typed it. That note became a narrative. It is not something that can easily be put into a spreadsheet.”
Dr. Sharpless worries that the data acquired by companies like Flatiron will not be readily available to researchers. But if the companies manage to solve the medical records problem cheaply, he said, “we’d like to work with them to figure out how to liberate the data.”
Dr. Wagle is making data from medical records and patients’ experiences public as he gets them. After 2 1/2 years, though, he is disappointed by how little there is to share.
The patient who inspired his project had a lethal form of thyroid cancer. She was expected to die in a few months. In desperation, doctors gave her a drug that by all accounts should not have helped.
To everyone’s surprise, her tumors shrank to almost nothing, and she survived. She was an “extraordinary responder.”
Vastly more here:
Much the same with the “data are trapped” will happen with the myHR
The myHR, as we all know, is a mountain of .pdfs with some atomic data and images etc. to handle pathology and imaging results. The closest to atomic data will be the medicines data I would suspect.
Data at the level described above may be partially captured but will more than likely only even be partially available in practice systems.
Sadly I suspect the solution of re-entering the important data is going to be the only viable one as it has turned out to be in the U.S. at a cost I suspect no one will be able to afford.
So, what sounds really simple turns out to be just too hard!
David.

6 comments:

Anonymous said...

And is the innovative goal of secure messaging to send and receive PDF? Tim and co are from a period lost in the annuals of computer sciences. Shame really they could have been the ones to save us from chisels and stone

Anonymous said...

It could be a study that used one of ADHA's cute little test beds - what is it about myhr that makes it totally unusable and useless for patients, GPs and research? Not that you need a test bed, it is self evident, if you know what to look for and what it means when you find it

Tim and co can't save PCEHR from its basic and fundamental bad assumptions, try as they might.

Bernard Robertson-Dunn said...

and just in case ADHA thinks that the answer is interoperability, this explains why it's so hard to solve.

Why EHR data interoperability is such a mess in 3 charts
http://www.healthcareitnews.com/news/why-ehr-data-interoperability-such-mess-3-charts

Anyone know how their interoperability project is getting on?

This is on their website
"Strategic Interoperability Framework RFT
Vision for a connected Australian Health System
Responses for the Strategic Interoperability Framework RFT closed on Monday 26 June 2017, 11:00AM AEST."

and, in November 2017:

"Collaborating with industry to achieve interoperability

A consultation and issues paper is currently being prepared with a view to undertaking a second round of consultation to explore these issues further with our stakeholders."

https://www.digitalhealth.gov.au/news-and-events/share-digital-health-today/share-digital-health-today-november-2017/partnering-for-success-to-achieve-interoperability

Andrew McIntyre said...

The focus needs to be on clinical models and terminology to allow data to be transferred, retrieved and compared without loss of information. There is an enormous amount of work required to create those models and make data entry easier for clinicians.

However to put that data into a message you need compliance with messaging standards so that the data is interpreted correctly by the recipient and any software that does decision support.

They think that "secure messaging" is the answer but that they have not even made a start on the first 2 requirements is naive and that is what all our big government eHealth Authorities have been. Rapid messaging of information with poor compliance with standards and no clinical models is a recipe for disaster. Recipients crash and fail to display critical data items correctly and information just gets lost. Strangely enough pathology made a good start on this in the 1990s but we have been off the track in the weeds ever since.

Health Level 7 was meant to be the data structures that contain the clinical data and it can do that, but you have to do it correctly for it to be understood. Somehow ADHA have decided that thats just to hard and we should just revert to pdf so we can get "something" going and trash the fax, but in reality they don't understand that is basically not very different to a modern fax network???

After 2 decades of government intervention the lack of progress is breathtaking and vendors are just not interested in fixing compliance issues any more because quality has never been on the horizon, and things sort of work, but I am sure many disasters have already occurred due to lost or poorly rendered results. The new generation of non technical management has made this worse because all they are interested in is "deals" and have no concept of the huge technical debt we have built up in the last 2 decades. The debt is huge and it lies just below the surface waiting to explode in ADHAs face. Whats worse than lack of connectivity, is fast connectivity with poorly complaint payloads and poorly compliant end points that carry critical patient data and are "sort of" displayed using each vendors hacked together untested logic that has never been tested for conformance or safety.

Anonymous said...

Andrew - totally agree! Good explanation. Hope someone is listening.

Bernard Robertson-Dunn said...

The Australian General Practice Alliance has just had day one of its conference.
https://www.gpdu.com.au/aboutgpdu/gpdu18/

According to twitter, they held a poll:

Question:
If you don't have your myhr yet are you going to opt-out?
Yes 63%
No 37%

https://twitter.com/Medicalrepublic/status/1002095771317977088

Looking at the program they had this session this afternoon:

Medicine of the Future or Digital Agency?

Panellists: Dr Mukesh Haikerwal, Tim Kelsey (CEO Australian Digital Health Agency)
Moderator: Dr Edwin Kruys

Summary:

Take the digital out of digital health agency and what do you have? The future says Mukesh Hakerwail, long time digital health evangelist. His opponent for this debate is Tim Kelsey, CEO of the Australian Digital Health Agency, one determined campaigner himself. Kelsey says we can't get there without a framework for digital and that's the job of government

I wonder what Tim thought of the poll results?