- Access all of their own health data. (The right to receive data)
- Share information in the record with other individuals or organizations, privately or publicly, as the patient sees fit. (The right to send freely)
- Aggregate data in a meaningful way from multiple sources (e.g., multiple physicians, clinical labs, imaging centers), before anyone else does, or at least as soon as anyone else does. (The right to aggregate)
- Flag errors and add comments, and have comments acknowledged even if not "accepted", in an automated and trackable fashion. (The right to correct data)"
Have you ever heard of e-Patient Dave? If you haven't, it would be well worth half an hour of your time to read the story of Dave deBronkart, a guy diagnosed with stage IV, grade 4 renal cell carcinoma who refused to go down without a fight. In the process of winning that fight, e-Patient Dave has become a nationally known spokesman for participatory medicine, which embraces the outlandish notion that patients should actually have some say in their medical treatment!
Dave deBronkart serves on the Board of Directors of the Society for Participatory Medicine (SPM), an organization dedicated to helping "networked patients shift from being mere passengers to responsible drivers of their health." Recently the SPM wrote a letter to the Department of Health and Human Services' Office of the National Coordinator for Health Information Technology. The letter was written in response to what has become known as the PCAST Report, issued in December 2010 by the President's Council of Advisors on Science and Technology. In the letter, SPM members Dr. Danny Sands and attorney David Harlow lay out the Society's call for a greater role for patients in health information technology:
"In the long run, each patient should have the right, and the easily exercised ability, to:
"For purposes of this discussion, our key comment, and our goal for the national HIT infrastructure, is that every patient must be a full peer on the health information network."
"Empowered, engaged patients want the aggregation of their health data to be done with them, not to them."
"We suggest that health information exchange should learn to navigate health information with and through patients, rather than presume to navigate around them."
The mechanism by which all these goals can be accomplished is, of course, a personal health record, or PHR. E-Patient Dave's PHR has played a significant role in his ability to directly influence policy on both a local and national level (links here and here). While the final definition of "Meaningful Use"with regard to eligibility for stimulus reimbursement includes providing patients with greater access to their medical records--due in no small part to pressure from deBronkart and others--the level of access SPM envisions goes far beyond current practice. In their letter, Sands and Harlow state that "funding should be provided to create freely accessible provider portal software. This provider portal software should be specifically designed to give patients direct access to their data encoded in their choice of simple formats as well as advanced XML formats. The portal should enable patients to send their data to individuals, organizations and HIE services that they trust as well as allow patients to download the data directly, so that they can do whatever they want with it. It is not enough to prevent the data silos that have dominated Health IT for so many years. These silos should be opened to the patient first and health care providers should be asked to use the same portals as patients with careful, evidence-based scrutiny of special privileges for role-based access."
To say that such a vision is audacious would be an understatement of epic proportions. As things stand today, even highly skilled healthcare providers find existing health information technology systems extremely cumbersome, time-consuming and frustrating to use. Furthermore, diverse HIT systems often cannot communicate with one another, making the notion of a truly interconnected, nationwide health information network seem like a faraway mirage.
But it would be foolish to dismiss future potential because of present conditions. Enormous amounts of time, energy and money are being thrown at the electronic medical record problem, and it seems clear to me that sooner or later it is going to be solved. Of course, what the final outcome will look like is still very much up in the air, which is why entities such as the Society for Participatory Medicine are pushing so hard to include patient access in the mix.
So what does any of this have to do with medical transcription?
I think there are a couple of different ways in which the participatory medicine discussion impacts the healthcare documentation profession. First of all, the story of e-Patient Dave should be an inspiration to us in terms of what one person can accomplish, alone and as part of an organized group. His determination and drive has not only changed his own life, but has enabled him to have a powerful influence on health policy at the highest levels. Now as part of the SPM and other organized efforts, Dave has been able to raise awareness to an even greater degree by uniting with others of like mind. It does not take a rocket scientist to draw a parallel between the achievements of the participatory medicine movement and what we as individual MTs and AHDI members hope to accomplish. If the proponents of participatory medicine understand the importance of influencing policy at an early stage, surely we in the MT industry can grasp that concept as well.
But if in fact patients are given the levels of access to medical records envisioned by the SPM, and if a sizable percentage of patients choose to take advantage of that access, I also see a potential opportunity for healthcare documentation professionals to assist patients in this process. Thinking about the basic health record functions mentioned earlier--accessing data, sending data, aggregating data, and correcting data--it requires no great stretch of the imagination to see that many patients will need help to accomplish these steps. How might medical transcriptionists' skill sets and experience with healthcare documentation prove useful in this scenario? What specific services could be offered to patients who want to be engaged with their own health information but aren't sure how to go about it? I think these are questions worth asking, and the answers could potentially translate into new career opportunities for healthcare documentation practitioners.
In the meantime, we certainly can and should take a page out of the participatory medicine movement's notebook and redouble our efforts to make our voices heard in every venue available to us. The power of a compelling story such as e-Patient Dave's can't be overlooked; what is our story, and who will tell it?
Jay Vance, CMT
AHDI Lounge Administrator/Moderator