I have worked in several health-care-focused organizations and as a consultant over the last 15 years, and been an active survey designer, analyst, and teacher my entire career. My publications and conference presentations address a wide range of topics including response variability in censuses and surveys, reliability of self- and proxy-reports in surveys, employment experience and health-related quality of life of persons with AIDS, public priorities for insurable health care, impacts of trauma on mental health and physical functioning in refugee populations, perceptions of Chinese and Vietnamese patients of quality of ambulatory care, physician perceptions of e-prescribing systems, and patient participation in on-line health communities. Engagements include: PatientsLikeMe Inc (2007-2012), Dana-Farber Cancer Institute (2004-2007), Harvard Program in Refugee Trauma (2001-2004), The Picker Institute (1997-2001), Center for Survey Research @ UMass-Boston (1989-1997), The Pennsylvania State University (1985-1989), and US Bureau of the Census (1984-1985).
Medicine 2.0'08 (Toronto, Canada)
Background: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their healthcare providers. While this type of record does seem to have beneficial effects for the patient-ph...
Full Paper Publications
Journal of Medical Internet Research
Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data
Sharing Health Data for Better Outcomes on PatientsLikeMe
Use of an Online Community to Develop Patient-Reported Outcome Instruments: The Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ)
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