Nationalize health care, or daydream #2

We desperately need to change how we provide access to health care in this country, and how we pay for it. The incentives are perverse, leading to rational choices that hurt us all: patients avoid preventive care and crisis care, doctors order unnecessary tests to satisfy health insurers and malpractice insurers, drug companies don’t release scientific studies, patients avoid genetic testing, medical students avoid going into general practice or geriatrics, and an increasing number of the healthy among us avoid the insurance system. Emergency rooms are overloaded with non-emergent cases because of their triple status as the release valve for onerous hospital admission policies, the salve for poor scheduling practices by primary care and specialist offices, and the accepted delivery system for offering health care to the poor and uninsured. The system is navigable by the educated and persistent, who find themselves at great risk of avoidable errors that harm and kill. Objective measures such as infant mortality rates and the increase in medical tourism indicate that our health care system is not just worse than it might be; it is worse than plenty of other systems.

If we did not have to worry about our medical records being used against us, we could wholeheartedly embrace computerizing health care, which would offer numerous advantages for patients, doctors, and researchers. Imagine a universal data exchange system for all medical records. Any practitioner could pull up a patient’s history and test results, even from other hospital networks. Prescription errors and negative drug interactions could be greatly reduced, and off-label drug use could be studied. We could create a patient-centered me.med domain where patients could track their own symptoms, share stories, offer encouragement and advice, review their own records, annotate their own records and ask questions, set privacy and access levels, and start to become the empowered health care consumers that the advertising wants us to be. If the records are all centrally stored, NIH could track symptom and diagnosis patterns. Researchers could have a gold mine of data, and we could learn much faster that drug A is killing people, drug B is useless, and drug C is actually working against the latest variant of strep.

Our incomplete and inaccurate medical records are already for sale in uncontrolled ways, while patients are denied access to their own records in the name of HIPAA. Imagine going to me.med, logging in to your account, and having full access to your own records. You add a follow-up to your recent prescription record, noting when you stopped taking the drug because of a nasty side effect or confirming that you finished the course without missing a dose. You know that no employer will ever see these records, and you know that researchers only have default access to fully anonymized data. Oh, and here’s a note from a researcher, asking if you would answer a few specific questions or be willing to have some blood drawn to test for lead and bromine levels. There’s the randomly assigned anonymized ID code that this researcher has for you, along with a bar code for the clinic to use. You print out the bar code and go to the clinic, where they confirm in the system (without needing to know your name) that this is not a duplicate request, and that the researcher is immediately reimbursing the clinic $40, half of which goes to you in cash. And the results from the lead and bromine testing will be forwarded to your me.med account, so your doctor can advise you to seriously reconsider chewing on your windowsills. The researcher discovers that patients with elevated bromine levels have a negative reaction to Xatiremulch, and me.med lets the doctor know that they might want to reconsider renewing that Xatiremulch prescription until they check if your bromine levels are still elevated.

Nationalizing health care doesn’t mean that me.med will be designed well, any more than saying “We’re using XML” means that you’ve correctly solved your complex data tagging problems. But if we leave the continued computerization of the health care industry up to CIGNA and Blue Cross, I can guarantee that we won’t ever have a patient-centered me.med or a doctor-centered doc.med. Insurers are far from being the entire problem, but they are a critical piece of the problem.