79orative analyses of data at other locations in multicenter databases, while main-
taining strict confi dentiality of patient data.- to be contacted up to every 6 months by a data center in the future, if the patient
is no longer seen at the same initial clinical setting (a much more frequent occur-
rence than recognized by most clinicians), to monitor patient status indefi nitely
in longitudinal observations of long-term outcomes.
Most patients have been pleased to learn of an interest by health professionals in
long-term outcomes, and offer consent; although a few do not consent—a phenom-
enon that unfortunately may be increasing with incidents of breaching of security
and privacy.
An electronic patient history may be summarized in two reports, one for the
physician and one for the patient. The report for the physician presents a listing of
past history, including illnesses, surgeries, hospitalizations, allergies, family history,
and social history in a medical record format, for direct entry into an electronic
medical record (EMR) after review by the physician if desired. The attending physi-
cian must add a “chief complaint,” present illness narrative (which can be quite
brief), physical examination, and management plan. This capacity requires a design
to interface with an EMR, with a design to overcome the problem of multiple
incompatible EMRs through an HL7 interface and SMART on FHIR [ 114 – 116 ],
which is incorporated into development of the electronic 2- and 4-page
MDHAQ. Implementation of an interface with the EMR does require initial col-
laboration with the EMR vendor. However, the possible complexity of this collabo-
ration for an interface could reduce considerably the burden of typing or dictation
by the physician or assistant with each individual patient.
The second report of 4-page MDHAQ data to the patient is designed for the
patient to amend and/or correct errors in her/his medical history. Of course, a medi-
cal record is a legal document that cannot be altered. However, a medical history
database could be amended by the patient for future visits, to review for accuracy
and completeness, and amend with new developments over the patient’s lifetime.
The electronic history also could be made available by the patient to other practitio-
ners involved in the patient’s care, or through the EMR with patient consent, for
capacity for review and endorsement within the record by the physician, and the
possibility of extracting the data for subsequent clinical research. Again an HL7
interface and SMART on FHIR appears required to overcome the problem of mul-
tiple incompatible EMRs.
Availability of electronic MDHAQ data in a single database could facilitate anal-
yses of research questions; e.g., how many patients in a particular practice are tak-
ing methotrexate or a specifi c biological agent, how many people being treated for
RA have a history of pneumonia, or joint replacement surgery. A database in the
infrastructure of all rheumatology care could obviate a need for specifi c registries
and greatly reduce costs of assessing outcomes in patients with rheumatic diseases.
Readers and EMR developers are invited to inquire about use of an electronic
MDHAQ by contacting the senior author at [email protected].
3 PROMs (MDHAQ/RAPID3) and Physician RheuMetric Measures