Ezra Klein, a columnist in the Washington Post who focuses on United States health policy, recently wrote a post about electronic medical records, arguing that it is absurd that we have not yet adopted their use:
The fact that it’s 2010 and we’re having a conversation about how to move records from paper to computers is evidence of how screwed up the American health-care system is. In part, you’re dealing with the fractured incentives in the system: It’s good for patients and good for insurers if doctor’s offices spend money setting up computer systems, but it’s not necessarily going to make doctors any money, and the doctors themselves are frequently older and don’t want to learn a new system. That’s one reason why systems where the insurer and the provider are the same — think Veteran’s Affairs or Kaiser Permanente — tend to be ahead of the curve on electronic medical records.
But even if the economic analysis makes you sympathetic, the end result is still absurd. Imagine walking into a bank where clerks scrawled all your information in a giant ledger book. You’d run out and tweet all your friends about this hilarious bank from the 18th century. But we actually let people do this with our medical records, and then some of us die or have serious problems because our records get lost or our doctor’s handwriting is illegible.
I have a few different perspectives on medical records. First, I’ve generated a significant number of my own records and have been annoyed and frustrated many times by the lack of coordination in the care I’ve received and the seemingly endless need to provide the same information over and over again. It does seem anachronistic to me to rely almost entirely on handwritten documents to track care.
For another perspective, I often gather, review and interpret the records of others to support their applications for disability benefits. Benefits programs have definitions of “disability” that require complicated analysis and review of a person’s entire medical record to pick out enough information to decide if they meet whatever the disability standard is for that program. And for the low-income folks I work with, who have choppy and intermittent access to health care that is usually spread out among a staggering number of disconnected health care providers, the task of coercing and cajoling the various doctors and medical facilities to copy the handwritten notes in a medical file is often overwhelming and sometimes Sisyphean.
If people get past the initial barrier of gathering the records, there is often an issue of actually figuring out what the damn things say. I know it’s cliche to joke about doctor’s handwriting, but in my experience, those jokes are founded in page after page after page of incomprehensible scrawl with a seemingly infinite series of baffling abbreviations and large sections that we sometimes cannot decipher even after 6 of us (including a doctor and a nurse!) spend an hour trying to make it out. I create my own indexes and chronologies and piece together when each medication started and stopped and when a diagnosis was made.
Sometimes, our clients have gotten medical services through the Veteran’s Administration (VA). The VA mails me a CD-ROM that loads the entire medical file in chronological order in typed PDF format, entirely searchable. (With the proper HIPAA-compliant releases, of course, you can’t just get people’s records from the VA.) Periodically, around every 6 months, the system automatically generates a list of medications and diagnoses in the records. The CD has the medical imaging on it, so I can get one of my experts to look at it. It is such a big difference that we sometimes squabble over the cases with VA records because they’re so much easier to deal with.
On the other hand, there are obvious and significant privacy concerns. I do not want it to be easy for an employer, law enforcement, insurance companies, or really any person or entity to whom I haven’t given direct and explicit permission, to get hold of my medical records or to be able to send them in an email in the blink of an eye. And given the existing level of ableism and discrimination, that is certainly an issue with life and death consequences for some people with disabilities. I do not know whether it’s possible to safeguard medical information to the necessary level while still allowing the accessibility and coordination that make electronic medical records so appealing.