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Constructs

Construct Details

Construct Name:	Demographics
Definition of Construct:	Demographics refers to individual charactics of the study participants including marital status, employment status, education level, and questions about race/ethnicity.
Theoretical Foundation:
Synonyms for Construct:
Similar Constructs:
Associated Constructs
Keywords:	EHR Candidate

No references found.

Measures

Datasets

Marital status

Employment status

Education status

Race/Ethnicity

Classification of race by others

Multiracial children

Sexual Orientation

Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign)

PHENX Demographics (EHR Campaign)

The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign)

California Health Interview Survey

Country of Birth

(Last Updated: 2/22/2011 12:30:20 PM by Dave Garner)

Comments (36 comments)

UT Health School of Public Health, 4/11/2011 4:08:40 PM By Maria Fernandez, University of Texas Health Science Center at Houston School of Public Health The income categories where the lowest level atrts at "less than 25,000" (such as in the BRFSS) will fail to capture differences between low income and very low income individuals. The HINTS question is better in this regard. Whether or not he individual was born in the US and how many years they have been in the US are also important variables to include.
EHR Campaign Evaluation, 4/11/2011 4:06:32 PM By Maria Fernandez, University of Texas Health Science Center at Houston School of Public Health Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 4 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations
EHR Campaign Evaluation, 4/10/2011 7:23:02 PM By Laura Hayman, UMass Boston College of Nursing & Health Sciences Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 5 Recommendations
EHR Campaign Evaluation, 4/8/2011 5:12:58 PM By Abdel Fahmy, Access Community Health Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 4 PHENX Demographics (EHR Campaign) = 4 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations
EHR Campaign Evaluation, 4/8/2011 2:58:51 PM By Thomas Land, Mass Dept of Pub Health Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 4 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations
EHR Campaign Evaluation, 4/6/2011 4:54:22 PM By Barbara Fletcher, University of North Florida Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 5 PHENX Demographics (EHR Campaign) = 5 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 5 Recommendations
Religious Preference, 4/4/2011 1:50:33 PM By Magdalena Szaflarski, University of Cincinnati Self-described religious identification should be included under Demographics. At the minimum, the following broad categories are recommended: Christian, Other (non-Christian, e.g., Jewish, Muslim, Buddhist, etc.), No Religion Specified (Atheist, Agnostic, No Religion), and Refused. Detailed categories are listed in the 2010 US Census.
EHR Campaign Evaluation, 4/4/2011 12:59:48 PM By Doug Fernald, University of Colorado Department of Family Medicine Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 4 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations Simpler items are better. Questions about birthplace outside the US, while important, are sure to be challenging in routine, frontline primary care. Preference for items that comport with widely recognized and utilized standards, like BRFSS.
EHR Campaign Evaluation, 4/4/2011 8:12:04 AM By Paul Estabrooks, EHR candidate measures Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations
EHR Campaign Evaluation, 4/3/2011 5:29:21 PM By Michelle WIlliams, University of Washington Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 4 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 2 Recommendations
EHR Campaign Evaluation, 4/3/2011 10:06:24 AM By Russ Glasgow, Institute for Health Research, Kaiser Permanente Colorado, (Denver CECCR) Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 4 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 5 Recommendations Would be much easier to rate if could see the actual items recommended here. I am concerned about the number of items; especially that several of these might not be simple, face valid or single item measures. Think we should think carefully about- as one earlier respondent commented, unintended potential negative consequences of asking such things as country of original, immigrations, sexual orientation, etc. Will likely need a strong, plain English statement about privacy and what this info will and will NOT be used for, etc. I would rate, personally- for purposes of discussion if we cannot include all- and I do not think we can: 1. Address- which I think can be used to retrieve amazing and ever increasing number of things including economic and environmental factors 2. HINTS items to provide brevity and harmonization 3. Employment- see earlier comments Language preference seems essential and might be bundled with some of he literacy.numeracy items? Not sure as posed number of children is relevant or actionable- IF want to go this route- something like suggested by Jerry Suls below would be more relevant and useful
EHR Campaign Evaluation, 4/1/2011 4:26:19 PM By Hardeep Singh, Houston VA and Baylor College of Medicine Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 2 PHENX Demographics (EHR Campaign) = 2 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 2 Recommendations Demographic data is important but we need to capitalize on coded demographic data that can be directly used from EHRs rather than collect new survey information. The 11 measures selected are a good start but Birthplace and Citizenship might not be as well-received. Several of these measures will pose some challenges in data collection so it would be good to ensure standardized select lists for each measure that can allow collection of structured data through EHRs. I am not sure though if there is any agreement between all the different EHRs what measures they include and if its easy to add measures or standardize all these elements.
Time-varying variables , 3/31/2011 9:12:45 PM By Ming Tai-Seale, Palo Alto Medical Foundation Research Institute Some of these sociodemographic variables can change over time. e.g., employment, marital status. The EHR needs to built the capacity for historical data on them. Current EPIC seems to not have historic data on them.
EHR Campaign Evaluation, 3/31/2011 1:35:12 PM By Michael Castera, South Carolina Dept of Health and Environmental Control Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations
EHR Campaign Evaluation, 3/28/2011 6:46:41 PM By seana zagar, OCHIN Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 2 PHENX Demographics (EHR Campaign) = 2 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations Agree with 11 items to be captured as core set of demo data; also agree that HINTS is best of 3 being evaluated. However, suggest that ethnicity/race question on HINTS be expanded to capture information about multi-racial groups.
EHR Campaign Evaluation, 3/28/2011 4:53:35 PM By Jennifer Carroll, University of Rochester Medical Center, Department of Family Medicine Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 2 PHENX Demographics (EHR Campaign) = 2 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 2 Recommendations I agree with the set of 11 core measures shown above. In fact they are all already included and collected on a conistent basis (except maybe birthplace and number of children) in the electronic health records system I use (eCW or e-Clinical Works). I rated the BRFSS, PHENX, and HINTS measures all relatively low because I do not see the value added beyond what is already present and implemented in the ecW system I use. I agree with many of others' comments regarding the importance of occupational history, sexual orientation, and under-employment etc as also being considered. For these, there are existing items already in ecW to capture these data. I think directly asking income could be off-putting to many patients (and staff) and I favor proxy data (such as zip code) or questions about difficulty meeting expenses instead.
EHR Campaign Evaluation, 3/28/2011 4:53:24 PM By Jennifer Carroll, University of Rochester Medical Center, Department of Family Medicine Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 2 PHENX Demographics (EHR Campaign) = 2 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 2 Recommendations I agree with the set of 11 core measures shown above. In fact they are all already included and collected on a conistent basis (except maybe birthplace and number of children) in the electronic health records system I use (eCW or e-Clinical Works). I rated the BRFSS, PHENX, and HINTS measures all relatively low because I do not see the value added beyond what is already present and implemented in the ecW system I use. I agree with many of others' comments regarding the importance of occupational history, sexual orientation, and under-employment etc as also being considered. For these, there are existing items already in ecW to capture these data. I think directly asking income could be off-putting to many patients (and staff) and I favor proxy data (such as zip code) or questions about difficulty meeting expenses instead.
EHR Campaign Evaluation, 3/28/2011 4:52:38 PM By Jennifer Carroll, University of Rochester Medical Center, Department of Family Medicine Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 2 PHENX Demographics (EHR Campaign) = 2 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 2 Recommendations I agree with the set of 11 core measures shown above. In fact they are all already included and collected on a conistent basis (except maybe birthplace and number of children) in the electronic health records system I use (eCW or e-Clinical Works). I rated the BRFSS, PHENX, and HINTS measures all relatively low because I do not see the value added beyond what is already present and implemented in the ecW system I use. I agree with many of others' comments regarding the importance of occupational history, sexual orientation, and under-employment etc as also being considered. For these, there are existing items already in ecW to capture these data. I think directly asking income could be off-putting to many patients (and staff) and I favor proxy data (such as zip code) or questions about difficulty meeting expenses instead.
Race, 3/28/2011 9:42:24 AM By Linda Burhansstipanov, Native American Cancer Research Corporation Self-reported race/ethnicity appears to be as or more accurate than someone else classifying us which is widely known to be inappropriate. The CHIS demographics are very good (and I agree with committee that there would need to be minor modifications).
EHR Campaign Evaluation, 3/27/2011 4:23:38 PM By Gary Bennett, Duke University Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 3 Recommendations I'm not sure about the importance of classification of race by others when self-reported race/ethnicity is available. Also suggest using branching capabilities of most EHRs to assess a broader range of ethnicities than are assessed by the OMB categories.
EHR Campaign Evaluation, 3/27/2011 2:36:15 PM By Thomas Houston, UMass Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 5 PHENX Demographics (EHR Campaign) = 3 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 5 Recommendations
EHR Campaign Evaluation, 3/26/2011 7:51:03 PM By Lisa Klesges, University of Memphis Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 4 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 5 Recommendations Based on other comments, I endorse the idea of items assessing perceived financial difficulty (could be limited to medical expenses) and insurance status (e.g., self-pay, private, govt, VA).
Insurers, 3/26/2011 1:42:52 PM By Jennifer Hodgson, East Carolina University Since a great deal of what is available to patients regarding mental health care is related to insurance, I suggest including that as a demographic variable (whether they self pay, and type of insurance enrolled under).
EHR Campaign Evaluation, 3/24/2011 3:09:52 PM By Thomas Kottke, Medical Director for Evidence-Based Health, HealthPartners Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 2 PHENX Demographics (EHR Campaign) = 4 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations We have been able to assess disparities by collecting data on race, country of origin and preferred language along with the standard demographics. Our patients have a somewhat different demographic than california patients--this probably requires and open-ended response. GINI index from Zip code could probably substitute for asking income. Our investigators seem to ahve confidence in the data.
EHR Campaign Evaluation, 3/22/2011 8:57:47 AM By Wendy Nilsen, OBSSR/NIH Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey (EHR Campaign) = 3 PHENX Demographics (EHR Campaign) = 2 The Health Information National Trends Survey (HINTS) Demographics (EHR Campaign) = 4 Recommendations
EHR Campaign Evaluation, 3/16/2011 1:29:38 PM By Gerda Fillenbaum, Duke University Medical Center Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey = 2 PHENX Demographics = 4 The Health Information National Trends Survey (HINTS) Demographics = 2 Recommendations Should "Depression-EHR" be "Demographic-EHR"? None of the suggested sources is great. It is not clear who will provide the information. Date of birth is not always requested. Date on which data were gathered is needed, as is insurance status (and insurer). Race does not agree with Census codes (and who provides it?). Occupational status seems to be employment status. Unclear how "occupation" is to be coded. It should be made clear which data need be asked only once (eg, date of birth) and which is needed on each occasion (marital status). Income is absent.
EHR Campaign Evaluation, 3/16/2011 11:21:18 AM By Maureen Boyle, NIH, OBSSR Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey = 3 PHENX Demographics = 4 The Health Information National Trends Survey (HINTS) Demographics = 5 Recommendations Many people have suggested that inclusion of occupation information across the lifetime is important for assessing health risks.
Stephen Taplin, 3/15/2011 12:15:12 PM By Stephen Taplin, NCI What is currently in EPIC or any of the other large EHRs. Would be nice to know whether the proposed measures and values are consistent with what is collected in existing EHRs. Race should be consistent with national census and separate from ethnicity.
EHR Campaign Evaluation, 3/14/2011 7:14:51 PM By karen emmons, dfci/hsph Measure Ratings Behavioral Risk Factor Surveillance System Demographics Survey = 3 PHENX Demographics = 3 The Health Information National Trends Survey (HINTS) Demographics = 5 Recommendations
social support, 3/3/2011 10:14:11 PM By Jerry Suls, University of Iowa/Resident IPA NCI (8/2010-8-2011) Does the person have a friend or relative on whom they can rely if something bad happens? (dichotomous) Or based on Brown's work- it could be rephrased a friend or relative with whom they can confide if something bad happens.
Beyond simple income, 3/3/2011 10:11:05 PM By Jerry Suls, University of Iowa/Resident IPA NCI (8/2010-8-2011) Does the person perceive they have sufficient funds for the essentials?
Faith community, 3/3/2011 10:10:13 PM By Jerry Suls, University of Iowa/Resident IPA NCI (8/2010-8-2011) Does the person have a faith community? (regardless of how they is defined)
Occupation, 3/3/2011 10:00:25 PM By Jerry Suls, University of Iowa/Resident IPA NCI (8/2010-8-2011) it is important to assess employed/ unemployed and underemployed
Sexual orientation, 3/3/2011 9:59:32 PM By Jerry Suls, University of Iowa/Resident IPA NCI (8/2010-8-2011) Very important to collect information on sexual orientation. Regardless of the direction the "politics of gender" goes, this is an important demographic factor for contemporary and future policy and public health.
Occupation and industry, 3/1/2011 12:02:35 PM By Michael Attfield, National Institute for Occupational Safety and Health Current employment status (included currently) is not enough. For multiple applications, including patient care, population-based surveillance, and prevention, there must be questions to the patient on current occupation and industry as well as usual (longest-worked) occupation and industry. Such information can be employed to help physicians diagnose problems of occupational origin or exacerbated by work (e.g., asthma), and help the affected person recover or avoid further problems. Just as importantly, the information can be aggregated and used by governmental and other agencies to evaluate trends and patterns of disease and injury, identifying problem areas, and motivating and directing prevention. The National Institute for Occupational Safety and Health has long used these measures for surveillance and prevention, and they are simple to collect and not burdensome. They are best collected using drop-down lists of terms. A number of surveys, e.g., NHANES and BRFSS have employed these variables in conjunction with NIOSH, and these variables are recorded on the death certificate. The electronic health record should maintain a history of such information for each patient, thereby developing a quasi-work history over time, and thus providing better data than one-time information. Of the things that could be done to help detection and prevention of occupational disease and injury, this is one of the most important. It should not fall through the cracks now, because including it later might be much harder.
Health Policy Committee Statement, 2/24/2011 9:40:13 AM By Maureen Boyle, NIH, OBSSR The Health Information National Trends Survey (HINTS) The CDC’s Behavioral Risk Factor Surveillance System (BRFSS) The 2010 census The NIH PhenX project The National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDE) Project The California Health Interview Survey (2009) We propose the following items be captured as the core set of demographic data. Some items that remain stable across the lifetime will be collected once and maintained in the EHR. Other items that are subject to change will be updated on a more regular basis. We acknowledge that there are many other demographic measures that would be useful and we welcome debate over which items constitute the core set of information that should be collected for all adult patients. Subsequent efforts will be aimed at developing standardized measures for additional supplemental data elements. Measures: 1- Sex/Gender 2- Age/Date of Birth 3- Ethnicity/Race 4- Education 5- Occupational Status/Occupation 6- Marital Status 7- Number of children 8- Birthplace 9- Citizenship 10- Veterans Status 11- Language Preference To maintain consistency we feel it would be best to select questions from a single, well validated survey. The NINDS CDE demographic survey and the 2010 Census survey did not cover all of the elements that we felt were important to include. We are therefore recommending the following three surveys for consideration: 1- HINTS- Based on the completeness and simplicity of the HINTS survey the workgroup believes this would be the best instrument for the current purpose. 2- BRFSS- The BRFSS was designed as an interview based survey, however it is relatively simple and could be converted to self report. 3- PhenX- The PhenX survey is also interview based. Most of the questions are straight forward, however some adjustments would need to be made to make it appropriate for self report. 4- CHIS 2009- This survey is extensive and covers the majority of measures listed above, however adjustments would be necessary for self report. The Census and NINDS CDE surveys each only included a few of the desired measures and are therefore not being recommended by the workgroup.

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