Actively assessing and addressing health disparities requires accurate collection of data on race/ethnicity and language (r/e/l) of patients. The Institute of Medicine reports that “data on patient race, ethnicity, and primary language would … help [health care] plans monitor performance, ensure accountability to enrolled members and payers, improve patient choice, allow for evaluation and intervention programs, and help identify discriminatory practices” (Smedley, Stith, and Nelson 2003
). While there is some information on r/e/l data collection in hospitals (Blustein 1994
; Kressin et al. 2003
; Hasnain-Wynia, Pierce, and Pittman 2004
;) and in community populations (McHorney, Kosinski, and Ware 1994
; Sullivan, Karlsson, and Ware 1995
; Ngo-Metzger et al. 2004
;), little is known about r/e/l collection in ambulatory care systems.
The Palo Alto Medical Foundation (PAMF) is an ambulatory care system and a Sutter Health affiliate. One of PAMF's three health care divisions, the Palo Alto Region (PAMF/PAR) has clinics staffed by 380 physicians in 40 specialties. It currently provides coverage in three California counties with 11 clinics and centers, and receives 750,000 patient visits/year with over 240,000 active patients. The EPIC electronic health record (EHR) system has been in use at PAMF/PAR since 2000. According to census data for the PAMF/PAR service areas, 47 percent of respondents reported at least one race/ethnicity other than white.
Before December 2006 at PAMF, race/ethnicity information was collected for patients entering the ambulatory surgery center and for cancer patients in a de-identified manner on separate systems (other than the clinical record) and reported in aggregate to external agencies (such as OSHPD). These values were not linked to individual patient records, and thus are not usable for analyses on disparities based on r/e/l. The known r/e/l based health disparities in the PAMF catchment area (Iribarren et al. 2005
; Cresswell et al. 2008
;) along with well-established national health disparities (Agency for Healthcare Research and Quality
) made a compelling case for the collection of r/e/l data. As a result, the Quality Improvement Steering Committee (QISC) of PAMF/PAR approved r/e/l data collection for all clinic patients in December 2006.
A PAMF/PAR taskforce, comprised of 14 members from the operations, information technology, and research divisions, designed the patient r/e/l questionnaire. The final form was comprised of five questions about race, Spanish origin, ancestry, spoken language, and interpreter services (). In question one, a patient may select up to two races from predefined categories. The second question asks about Spanish origin. The two-question format asking race first was designed to satisfy California State regulations for Ambulatory Surgery Units (OSHPD 2005
). The third question is a free text response where respondents can identify up to two ancestries, because the taskforce felt it was important for patients to have an opportunity to self-identify their ancestry or family lineage. The free text responses are matched to 1,035 possible ancestries derived from Census Ancestry List and the Surveillance, Epidemiology, and End Results (SEER) Program (U.S. Census Bureau 2000c
; Johnson and Adamo 2007
;). The first three questions are based on the U.S. Census 2000 question format (U.S. Census Bureau 2000a
). The last two questions ask a patient to self-identify his/her primary spoken language and the need for an interpreter. The language question (#4) is a free text response that is matched to a back-end table of 64 most common languages in the PAMF catchment area.
Patient Demographics Questionnaire
The following described studies were not designed a priori as a research project. Rather, this is a collection of small studies that were initiated to determine best r/e/l collection methodology for quality improvement purposes. These studies were considered exempt from review by the Palo Alto Medical Foundation Institutional Review Board. In retrospect, these studies formed and supported the path of implementation at our organization, which we hope will be helpful to other ambulatory health care delivery systems with similar goals for r/e/l collection. The pilot studies were as follows:
- A comparison of three methods of asking patients to identify their own r/e/l: mail, telephone, and in-person clinic visit questionnaires;
- A comparison of two ways of distributing and collecting the in-person clinic visit r/e/l questionnaires (substudy of #1)—a front desk method (FDM), with questionnaires distributed by patient services representatives (PSR) and an exam room method (ERM), with questionnaires distributed by medical assistants (MA).
- A data-entry time study, to estimate additional resource allocation needed for timely recording of r/e/l information into the electronic health record (EHR).