There is a lot to write about with all the EHR studies appearing the last couple of days. And I will do so in due course. For now I would like to react to 2 blog articles that were published yesterday,
Health IT: What We Can Learn From Toys ‘R’ Us and Patient control over patient data in electronic health records: A work in progress.
I think I have made clear over the past few years where my priorities and preferences are. And I use those to reference what others are writing. Let’s start with a quote from Sarah Dine’s blog at Health Affairs:
“Richard Platt addressed the multiple systems that are now in place that provide data and are getting closer to real-time data in population health, such as adverse events for vaccines and immunizations, notifications of disease, flu surveillance, and disease prevalence. IT systems have to pull together these reporting points of interest from a variety of electronic reporting systems, claims data from defined populations, electronic medical records (EMRs), registries, and public health reporting. For Platt, what is needed for these systems to work and to continue to grow are flexible and reusable data that are stored accessibly, as he put it, in the “virtual warehouse” like a Toys “R” Us store. If you enter a Toys “R” Us facility in any city or state, the same type of merchandise is always displayed in the same aisle. A flu surveillance researcher should be able to access the same type of data from different systems in the same way.”
Sarah Dine: Health IT: What We Can Learn From Toys ‘R’ Us
As a European my first spontaneous reaction was, you asked for it.This is the consequence, IMHO, of a market driven society. A logical reaction would be to say that a central system would solve the diversity problem, but the UK is actually doing it’s very best to disprove that concept. The only way to achieve such a “virtual warehouse” concept is to have all parties agreeing to the same standards, at least.
The standards aspect is also essential to achieve Alan Garber’s dream with EHRs:
“to conduct top-flight observational studies to aid comparative effectiveness research”
Sarah Dine: Health IT: What We Can Learn From Toys ‘R’ Us
and holds even more for the vision of the USA National Coordinator for Health Information Technology:
“Blumenthal called for laying the groundwork for “learning health care systems,” so that at every point of contact–patient, provider, community, state, and federal government–there are opportunities to learn. He noted that no foreign model exists for this type of learning system; other countries may have more-robust electronic records systems than the United States has, but the United States has a unique opportunity to build a learning system with robust capabilities to capture data, aggregate it into common data elements, and use it for feedback and learning.”
Sarah Dine: Health IT: What We Can Learn From Toys ‘R’ Us
Dr. Blumenthal is absolutely right, such a system does not exist anywhere, for we never created the foundations for such a system, i.e. the right standards. And to achieve that learning concept there are 2 important aspects needed:
- ways to standardize the input of experience, which is by nature mostly narrative (that’s why we focus on ontologies during the coming ICMCC event)
- and a leading role for the patient.
Which brings me to the other blog post.
- “Are patients now ready to insist on having their health care providers upload their health information to PHR systems such as Google Health or Microsoft HealthVault? How can patients ensure that these data be transportable from a tethered PHR to a freestanding one if and when they change providers or insurers?
- Are PHR platforms and health care providers prepared (and equipped) to act on these requests? My working assumption is that the answer at the moment is no, since there are some technical issues to overcome. One approach to the technical issues relating to real-time queries from one provider to another’s EHR is outlined here. It is unclear to me what would be involved (in time and money) in getting from here to there. (Technical congnoscenti: help me out here.)”
David Harlow: Patient control over patient data in electronic health records: A work in progress
And once again my guts reaction is, you get what you asked for. A PHR is an American invention that IMHO serves no purpose whatsoever. It only brings lots more work (especially for the patient), will by definition double everything as every piece of information will be stored at least in 2 locations, the EMR/EHR and the PHR and unless you create new legislation a PHR will never become a “serious” document, as there will be no guarantee that it contains all available information.
Recently in the USA voices were being heard questioning the value of a PHR without the guarantee that it contains ALL data about a patient. Politics in the USA made things even more complicated when congressman Kennedy introduced the concept of a patient being able to leave out information if he so wishes (see my reaction).
As I have said before, we should get back to where we came from, an EMR is a medical record, containing medical data, produced by clinicians, laboratories etc (it also will contain claims data, but that should not be the core of it). An EHR is a health record, containing health data, i.e. all medical data available PLUS input relevant to someone’s health like his/her own observations; in short, EHR = EMR + Patient.
An EHR should be a container of links, I have said it more than once, links to all EMRs that exist about a particular person combined with all other links available (input from patient, monitoring devices, ODLs, caregivers). And that person should be the owner of all data. He/she should be the one to decide who is being given access to which part of the data, ultimately having the right to create a so called “sealed envelope” thus separating certain information from all the rest, only available with more than specific authorization, or under emergency circumstances. But never leave out information.
I am a strong advocate of the patient being in control of his data. That is one of the main goals we as ICMCC want to achieve and why we as ICMCC proposed the guidelines on Patient Record Access which we asked the WHO to put on their agenda to have it declared a universal (in the true sense of the word) patient right and which is now on the desk of Dr. Chan.
Finally, let me once more repeat myself. The first bullet in David Harlow’s blog starts with: “Are patients now ready”. No, they are not. We still have not told the patient what is awaiting him. And no survey so far has shown that the majority of patients is aware of the tremendous paradigm shift about to happen in health. But that will be a different blog post.
Lodewijk Bos
