Comprehensive medical record planning

This article on the VA’s electronic records experience should be energizing autism service providers around the country, but I fear that it isn’t.

The doctors involved have their own electronic records issues, and they’re almost certainly uncomfortable with anything that could make them responsible for inappropriate disclosures of information to non-medical providers, HIPAA releases notwithstanding.

The private therapists, schools, behaviorists, and psychologists that serve our families are the very definition of a fragmented market. They all practice in much the same field and serve many of the same people, but they are almost all tiny businesses by comparison to the commercial private sector. Sole proprietorships make up the overwhelming proportion of the whole; the typical private school for children with autism employs no more than 30-40 people to address the needs of 20 or so students (and that’s with 1 teacher per student taking up the major part of workforce).

Public schools and programs operate within the confines of bureaucracies that are [understandably] not focused on the whole-life management of autistic spectrum disorders, and that means that even when any records are kept electronically, there is no mechanism for connecting those records to any other system.

What would the world look like if everyone thought like me on this?

• Every child’s family would have access to a secure system to collect all data (medical, educational, therapy & treatment, social, performance, and testing) in one standard format system that would enable parents to control access by appropriate persons to appropriate information. This top-level control returns the power to parents to manage the care of their children and allows them to more easily identify a high-powered concierge/case management “officer” to oversee every aspect of their child’s development.
• Every service provider would have the ability to review and analyze relevant data, whether medical, treatment, or educational. Electronic data can be analyzed automatically, as with management by exception, meaning that an ABA program could trigger alerts for a behaviorist when no progress is made over three teaching sessions, or a neurologist could see the effects of different medication levels on classroom activities. [Note to readers — I will have to find a link to the very interesting talk I observied at the 2009 Autism NJ conference.]
• If suitable data gathering mechanisms/processes/tools beyond paper and pencil could be efficiently deployed, they could be integrated with curriculum management tools to save time and money by increasing therapist/teacher efficiency, improve program management by allowing for “pre-programming” by behaviorists, and allow for further deep analysis to determine if there are pathways of performance that provide reliable signals for the future or the need for other interventions.

What would be important to you in a record-keeping system? Would you feel comfortable if you as the parent had absolute control over who could see what? Do you think school districts would provide you your child’s data in a compatible format?