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Patients Can Squawk, But We Have Little To Crow About Open Data

Posted on June 15, 2015 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site ( and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

One of the biggest disappointments at this year’s Health Datapalooza (which I found disappointing overall) was the continued impasse presented to patients who, bolstered by the best thinking in health care as well as Federal laws and regulations, ask for health data stored about them by doctors and other institutions.

Activists such as Regina Holliday and e-Patient Dave proved years ago that giving patients information and involving them in decisions will save lives. The Society for Participatory Medicine enshrines the principle. But the best witnesses for patient empowerment are the thousands of anonymous patients, spouses, parents, and children quietly trundling folders with their own records through the halls of hospitals, building up more knowledge of their chronic conditions than any professional clinician possesses, and calmly but inflexibly insisting on being equal partners with those who treat them.

There were plenty of high-minded words at the Datapalooza about patient rights to data. It was recognized as a key element of patient empowerment (or “activation,” as the more timid speakers liked to say) as well as an aid to better care. An online petition backed by an impressive array of health reformers is collecting signatures (whom someone will presumably look at) and encourages activists to speak up about this topic on July 4. HHS announced that anyone denied access to data to which the law gives her a right can submit an informal report to

Although occasional mention was made of personal health records (PHRs), most of the constant discussion about interoperability stayed on the safe topic of provider-to-provider data exchange. Keeping data with health care providers leads to all sorts of contorted practices. For instance, patient matching and obtaining consent are some of the most difficult challenges facing health IT in the U.S., all caused by keeping data with providers instead of the patients themselves.

The industry’s slowness to appreciate patient-generated data is also frustrating. Certainly, the health IT field needs to do a lot more to prepare data for use: consumer device manufacturers must assure clinicians of the devices’ accuracy, and researchers need to provide useful analytics that clinicians can plug in to their electronic systems. Still, doctors are demonstrating a disappointing lack of creativity in the face of this revolutionary source of information. It’s all to easy to carp about accuracy (after all, lab tests have limited accuracy as well) or just to state that you don’t know what to do with the data.

I heard about recent progress at the UK’s National Health Service from Brian Ahier, who is the only person I know who can explain the nuances of extensions to FHIR resources while actively using both his laptop and his cell phone at the same time. Ahier heard at a UK-US Bootcamp before the Datapalooza that the NHS has given 97% of its patients access to their records.

But there’s a bit of a caution around that statistic: only one-fifth of the patients have taken advantage of this right. This doesn’t bother me. First of all, one-fifth of the population with access to their personal records would be a dizzying accomplishment for most countries, including the U.S. Second, few people need access to records until some major problem arises, such as the need to see a specialist. They probably feel relieved to know the records will be there when needed.

Another aspect of patient control over data is research. The standard researcher-centered model is seen as increasingly paternalistic, driving patients away. They’re not impressed with being told that some study will benefit people like them–they want to tell researchers what really matters to them as sufferers, and hear more about the study as it goes along. Researchers are frantic to reverse a situation where most studies fail simply because they can’t sign up enough subjects.

The Patient-Centered Outcomes Research Institute (PCORI) is one of the progressive institutions in health care who understand that giving patients more of a say will be increasingly important for signing up patients in the first place, as well doing research of value to them. Its PCORnet combines traditional research databases with databases maintained by patient advocacy groups. Each member network can create its own policies for getting consent, which allows researchers to bend with the needs of their research subjects.

OpenClinica, the open source clinical research platform, just announced the release of an app that may contribute to the goals of taking input from patients and binding them closer to the research endeavor.

Public health officials also recognize the sensibilities of the people they monitor. At a panel on data about low-income people, speakers stressed the importance of collecting data in a respectful way that doesn’t make people feel they’re being spied on or could be punished for their behavior.

Let’s talk a minute about health care costs, if only because doctors and insurers don’t want to. (Some doctors are prohibited by their employers from telling patients how much a recommended procedure will cost, supposedly because they don’t want costs to intrude on what should ideally be a clinical decision. This is changing with the increase in deductibles, but often the doctors don’t even know what the final cost will be after insurance.)

One app so admired by the Datapalooza team that they allowed the company to demonstrate its product on the main stage during keynote time was Sensentia. This product everybody is so impressed with takes in information from health plans to allow patients as well as the staff at health care providers to quickly find the health plan benefits for a procedure. (I recently covered another company doing similar work with insurance and costs.)

Sensentia is a neat product, I am willing to aver. It accepts natural language queries, crunches the data about health plans and insurers, and returns the actual health plan benefits for a treatment. Of course, I know the cost of flying from Boston to San Francisco after six clicks in my browser, even though the calculations that go into offering me a price are at least as complicated as those run by health plans. One may be shocked to hear that that current phone calls to an insurer cost $3-$10. This is the state of health care–it costs more than five bucks on average for a doctor just to find out how much it will cost to offer his own service.

A panel on patient-generated data reported more barriers than successes in getting doctors to work with data from patient devices and reports from everyday life. Another panel about improving quality measures culminated in the moderator admitting that more patients use Yelp than anything else to choose providers–and that it works pretty well for them.

For me that was the conference’s low point, and a moment of despairing cynicism that doesn’t reflect the mood of the conference or the health care field as a whole. Truly, if Yelp could solve our quality problems, we wouldn’t need a Datapalooza or the richness of data analysis it highlights. But I think reformers need more strategies to leap the hurdles we’re facing and implement the vision we all share.

Pay For Performance, Patient Outcomes, and the Rock of Gilbraltar

Posted on April 30, 2009 I Written By

Quickly, now — which is easier to support?  I’ll give you a hint — most times, my little 5’0 personage would be choosing hoisting that rock on my shoulders.  Honestly, though, I’ll say that famous answer in healthcare, that it depends on the clinic.

Many years ago, when I was working for a very large multi-site cancer center,  I was called into a meeting with all the bigwigs.  You know, VP’s and such.  It was my first time, so be gentle.  I really didn’t understand why I was being asked, and the meeting invite was notoriously vague.  I was ushered into a very posh board room that I didn’t even know that we had (complete with video conferencing), at a round table with approximately 27 other people who were most definitely paid a lot more than I was (and had a bit better fashion sense, compared to my frazzled, just out of the data center look).  One of the VP’s announced that he was planning to look for a cancer-specific EHR/EMR that would encompass both radiation oncology and medical oncology, and interface with the main EHR that the hospital overall was going to implement.   He wanted to use the data that we gleaned from such a system to support one of the largest research studies done in a particular type of cancer therapy, in a prepatory round for pay for performance.  Then, he informed us that one of our vendors had said they were able to fill this need. 

The problem was, I knew that they couldn’t.  And I’m one of those people who doesn’t know, apparently, how to keep her mouth shut.  My immediate response was “They’re lying.”

“Oh, but they promised me.”

“I understand that, sir.  But they ARE lying.”

 I ended up with another four hours cut out another one of my days to be one of the folks who had to sit in on the demo.  Even worse “SM” pulled me aside and told me I had to run it, and I had to prove or disprove whether or not this integration was possible.   It was a grueling four hour ordeal for both me and the dog and pony show man, during which I did indeed uncover that they weren’t an integrated solution.   When I did, someone actually got up and ran to tell SM.

Moments like those make you wonder.

Even after we reported back to SM that we absolutely would not be able to support this research with a system (this vendor, we knew, was the closest), it was decided they were going to go forward.  Somewhere in all of this, I was assigned the entire deal — from the construction of the database to hold it (and the ability for folks working remotely to log into it to use it), to the design of the forms to gather the data (ranged from size of tumor to dosimetry data to whether or not they could still spit or eat steak), to the management of the bodies in motion.

Because I started as a database guru, I was given the task of cleaning up the treatment system data for radiation oncology, and bumping it up next to the chemo information we gleaned from registrars examining paper charts, and minimal amounts of information regarding the medical oncology from the paper chart and billing data.   Two of our radiation sites were ‘islands’, and yet another one at the time didn’t even have a robust record and verify system at the time.  This made for an extensive process.  Since part of the research was being administered as a telephone questionnaire, I also had to come up with the best call lists as I could.

I made sure to filter all the dead patients I possibly could out of the data set — not only did I use the SSI Death Index (doesn’t include goverment workers or teachers, and several other occupations), but I also used all the systems we had for the entire health system (I was a cool kid with the access).  I did everything I could, but in the end all of that was beaten when I sent the list to the site managers, who had their secretaries note additional deaths they had recorded from the newspaper.  You see, that was actually our best way of determining if a patient was, in their terminology “CTB.”  Which means Cease to Breathe.  I requested in earnest that if I died, that I was called dead.

In the end, they got their data — and we went through this painful process two more times for two other studies of the same therapy across differing diagnoses.  But one of the hard lessons came when I was cleaning up some of the data (I was one of the people who helped to type it in, since some of the clinics didn’t even have remote access due to affiliation issues).

The question was regarding whether or not the patient could chew their food.  You see, shoot enough radiation at someone’s head (it was a head and neck study), and their salivary glands won’t work. 

Unfortunately, the doctor had not properly noted the patient’s diagnosis ANYWHERE – it was billed wrong and clinically noted wrong.  We knew it was somewhere in the head, but it was a very non-specific head and neck ICD-9 (lemme show some ICD-10 love).  So, when the nurse called and asked the question, the patient’s wife had answered:

“You cut my husband’s tongue out.”

Lesson:  Every physician must be a champion of health data in order for HIT to truly succeed in any realm.