Health services research in the privacy age.
BACKGROUND
Strengthened regulations concerning privacy of health information are affecting large-scale health outcomes research.


OBJECTIVE
To create a data collection system that would facilitate outcomes research, avoid selection bias, and fulfill obligations to protect privacy.


METHODS
We created a web-based system that uses touch-screen computer technology for longitudinal collection of data. The system provides access to information in deidentified form, enables it to be linked to health services and outcomes data, and allows patients to join a research registry project (RRP) and be placed on a prospective subject list (PSL). PARTICIPANTS, MEASUREMENTS, AND RESULTS: Pilot testing in 86 consecutive patients who were seen at a large, urban, university-based general medicine practice and had a mean age of 50 years showed that 81 patients had no difficulty, 5 had some difficulty, and none had considerable difficulty using the computer technology to complete a health survey. No patients refused to complete the survey and all patients completed the entire survey. Forty-seven (55%) joined the RRP and 42 of these 47 (89%) joined the PSL. RRP participants were less likely than RRP nonparticipants to be divorced or widowed (P=.03) and less likely to have hypertension (P=.03) but had no other significant differences in sociodemographic or clinical characteristics. PSL participants did not differ from PSL nonparticipants.


CONCLUSIONS
The new system ensures privacy and appears to facilitate research recruitment and avoid selection bias.
Hess
Rachel
R
Division of General Internal Medicine, Center for Research on Health Care, University of Pittsburgh School of Medicine, Pittsburgh, PA 15213, USA. hessr@upmc.edu
Matthews
Karen
K
McNeil
Melissa
M
Chang
ChungChou H
CH
Kapoor
Wishwa
W
Bryce
Cindy
C
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003201:Computers; D003219:Confidentiality / Q000331:legislation & jurisprudence; D003625:Data Collection / Q000379:methods*; D005260:Female; D020408:Health Insurance Portability and Accountability Act; D006302:Health Services Research / Q000379:methods*; D006801:Humans; D020407:Internet; D008297:Male; D008491:Medical Informatics Applications; D008875:Middle Aged; D017063:Outcome Assessment, Health Care / Q000379:methods*; D010865:Pilot Projects; D012042:Registries; D011795:Surveys and Questionnaires; D014481:United States