post by Bill Gardner
This is a message for health researchers or psychometricians who develop diagnostic instruments or patient-reported outcomes measurements, and for clinicians and health organization leaders who use them:
Please read Newman and Feldman's article in today's NEJM on "Copyright and Open Access at the Bedside."
The authors recount the intellectual property (IP) history of the Mini-Mental State Exam (MMSE). The MMSE has been under copyright since it was developed, but was widely and freely used. The authors of the MMSE have more recently sought to profit from their IP. Moreover, they have raised copyright challenges to an alternative open access mental status exam. They are impeding the use of standardized mental status exams, and if so they may be harming patients.
Newman and Feldman argue for an extension of the open source copyleft approach to IP to instruments:
Copyleft is a general method for making a program (or other work) free, and requiring all modified and extended versions of the program to be free as well.
Most instruments have no commercial prospects and attempting to sell them will just waste your time. For most instrument developers, copyleft is simple common sense.
There is, however, an interesting counter example. If you have anything to do with child mental health, you know about the Achenbach Child Behavior Checklist (CBCL) and its many sister instruments. Achenbach charges for his instruments and protects his IP. Nevertheless, the CBCL has been cited in thousands of research projects and is routinely used by many clinicians, even though there are competitors that can be used for free. Why has the CBCL flourished? Achenbach has consistently developed and improved the instruments.
I believe that the future of mental health assessment and patient-reported outcomes is in computerized adaptive tests (CATs) that are continuously improved as assessment science improves and the prevalence of disorders changes. (I better believe this, since I am a PROMIS co-investigator.) To realize this future, we will need to identify the IP and business model to support an on-going non-profit organization that develops instruments and can deliver them to clinicians and patients. There is clearly much to learn from the free software movement (e.g., here or here).