Potential harms associated with routine collection of patient sociodemographic information: A rapid review

Abstract Background Health systems are recommended to capture routine patient sociodemographic data as a key step in providing equitable person‐centred care. However, collection of this information has the potential to cause harm, especially for vulnerable or potentially disadvantaged patients. Objective To identify harms perceived or experienced by patients, their families, or health‐care providers from collection of sociodemographic information during routine health‐care visits and to identify best practices for when, by whom and how to collect this information. Search Strategy We searched OVID MEDLINE, PubMed “related articles” via NLM and healthevidence.org to the end of January 2018 and assessed reference lists and related citations of included studies. Inclusion Criteria We included studies reporting on harms of collecting patient sociodemographic information in health‐care settings. Data Extraction and Synthesis Data on study characteristics and types of harms were extracted and summarized narratively. Main Results Eighteen studies were included; 13 provided patient perceptions or experiences with the collection of these data and seven studies reported on provider perceptions. Five reported on patient recommendations for collecting sociodemographic information. Patients and providers reported similar potential harms which were grouped into the following themes: altered behaviour which may affect care‐seeking, data misuse or privacy concerns, discomfort, discrimination, offence or negative reactions, and quality of care. Patients suggested that sociodemographic information be collected face to face by a physician. Discussion and Conclusions Overall, patients support the collection of sociodemographic information. However, harms are possible, especially for some population subgroups. Harms may be mitigated by providing a rationale for the collection of this information.


| BACKG ROU N D
Hospitals and health clinics routinely collect information from their patients for administrative reasons and medical records. This information provides basic information about patients and health concerns.
However, if additional sociodemographic data are obtained, it could also be used to inform strategies and policies to improve health equity, defined as the absence of differences in health outcomes that are reasonably avoidable. 1,2 Population characteristics that may contribute to health inequities can be captured using the acronym PROGRESS-Plus, which stands for place of residence, race/ethnicity/culture/language, occupation, gender/sex, religion, education, socio-economic status, social capital and "plus" to capture additional characteristics, such as context-relevant personal characteristics (eg age), features of relationships and time-dependent characteristics. [3][4][5] Routine capture of this information will enable the development of specific solutions to address service gaps to these potentially disadvantaged populations. Health systems need to consider the optimal method for routinely capturing this information. For hospitals, routine data capture works best if it can be incorporated into existing work flows. 6,7 For some PROGRESS-Plus characteristics, there are strong clinical indications to obtain this information to guide clinical decisions. For these concepts, it is sensible to collect the information during routine clinical processes, such as during patient registration or during the provision of a medical history by the patient to a provider. However, for several PROGRESS characteristics, specifically race/ethnicity/culture/ language, religion and income, the relevance of the information for clinical decision making may not be apparent to patients. Self-reported sociodemographic information is more reliable than health-care provider observation-determined which may lead to stereotyping based, for example, on name and skin colour. 8 Therefore, collection of information would be most useful when collected directly from patients, but studies have found that the collection of this information may cause patient distress, especially for patients from potentially disadvantaged or vulnerable populations. 6,7 In addition, because of the uncertainty of the immediate clinical benefits derived from the collection of this type of information, it may be difficult to obtain and the collection itself could interfere with the trust relationship between patients and their providers.
We conducted a rapid review to identify the potential harms associated with the collection of race/ethnicity/culture/language, religion and income information as well as best practices for how, when and by whom these data should be collected.

| OBJEC TIVE
The objectives of this rapid review are to: • Identify potential or actual harms experienced by patients or their families when they are asked to provide information about their race/ethnicity/culture/language, religion and income during routine health-care visits.
• Identify clinician's concerns with the potential harms experienced by patients or their families when they are asked to provide information about their race/ethnicity/culture/language, religion and income during routine health-care visits.
• Identify best practices for the routine collection of sociodemographic data to reduce the risks of potential harms for patients and their families.

| ME THODS
We conducted a "rapid review" using accelerated systematic review methods based on the Cochrane Handbook for Systematic Reviews of Interventions, and the methods recommended by the Cochrane Rapid Reviews Methods Group and the Knowledge Synthesis Group at the Ottawa Hospital Research Institute. [9][10][11] A protocol for this work was developed a priori and published on the Campbell and Cochrane Equity Website (https://methods.cochrane.org/equity/ projects/sociodemographic-data-collection).

| Search strategy
We developed and tested a search strategy (Appendix S1) and searched the following databases on 30-31 January 2018: • MEDLINE via OVID (1946 to 31 January 2018), • PUBMED via NLM "related articles" search in PUBMED using five "gold standard" articles as seed papers and • Healthevidence.org.
No methodological filters, date limitations or language restrictions were applied. We also screened the reference lists of included studies and their related citations using Scopus to retrieve the abstracts.

| Study selection
The titles and abstracts of de-duplicated citations were screened using an accelerated method in which a study assessed as relevant was included for full-text screening without being reviewed by a second assessor, but studies assessed as not relevant were assessed by another member of the author team. The full-text papers identified as potentially relevant were screened independently, in duplicate, by two members of the author team.
Eligibility was assessed using the following criteria.
Population: Patients presenting to health-care providers including hospitals or clinics. It is important to note that some studies surveyed the general populations' perceptions on the collection of sociodemographic information in health-care settings if they were to present to a health-care provider. For the purposes of this report, these participants will be referred as patients. We excluded health-care plan settings (eg data collected by health insurance providers).
Interventions: Routinely solicited information on race/ethnicity/culture/language, religion and/or income-by survey or by direct questioning.
Comparison: No comparator was required for this review.
Outcomes: Provider's, patient's and/or family's perception or experience of adverse outcomes including a perception of persecution; a perception the information will be used for ulterior purposes; and other reasons for failure to provide information.

| Data collection and synthesis
Data extraction forms were developed and tested using Excel. Data were extracted for country, study design, data collection method, type of data collected, setting, population and outcome. Data were extracted by one reviewer and verified by a second reviewer.
Evidence was synthesized in data summary tables.

| Results of search
The search identified 3437 records ( Figure 1). After duplicates were removed, 3329 titles and abstracts were assessed for eligibility. We assessed the full text of 74 studies from which 59 were excluded because they did not obtain primary data, they did not discuss possible negative outcomes for patients from the collection of race/ethnicity/culture/language, religion or income information, or the data were collected outside of the health-care setting (eg for health insurance plans). We identified four additional studies through searching the reference lists of included studies and using the related citation function in Scopus. A total of 18 studies reported in 19 papers were included in this review.
Results are presented in three categories: (a) patient perceptions or experiences, (b) provider perceptions and (c) patient recommendations for sociodemographic data collection.

| Patients' perceptions or experiences of harms
All 13 studies reporting patients' perceptions or experiences assessed the harms associated with the collection of race/ethnicity/ culture/language data. [12][13][14][15][16][17][18][19][20][21][22]27,28,30 Three studies assessed the harms associated with the collection of income data, 16,18,19 and two studies assessed the harms associated with the collection of religion data. 14,19 Six studies reported patient perceptions, 12,13,15,16,18,20,30 four reported patient experiences, 17,18,22,27 and three reported both patient perceptions and experiences. 14,21,28 An overview of the various harms perceived or experienced by patients in each citation is presented in Table 2. A data summary of patient perceived or experienced harms is found in Table 3. We have grouped the potential perceived or experience harms into the following themes: altered behaviour, discomfort, discrimination, misuse and privacy concerns, offence and negative reactions, and quality of care.

| Altered behaviour
In one study, patients indicated that they would alter their physical appearance, such as the way they dress, to hide their identities or to prevent being negatively judged in relation to ethnic stereotypes. 21,30 Patients reported that they lie about their race/ethnicity if they believe their response will affect their treatment. 21 Another study found that the collection of sociodemographic information may affect care-seeking behaviour, as 26.3% of Hispanics and 18.5% of African Americans in the study reported that they would be less likely go to a hospital or clinic collecting race/ethnicity information. 12

| Discomfort
Discomfort was the most frequently reported harm perceived or experienced by patients. [12][13][14][15][16][17][18][19][20]27 Patients felt the most uncomfortable disclosing their income. 16,18,19 Patients in two studies reported that the reason for discomfort was the belief that socio-economic position should not determine immediate health-care delivery. 16,19 One study found that non-minorities, females, patients of high socio-economic position and patients over the age of 35 years felt the most uncomfortable disclosing their income status. 18 In three studies, 15% of patients indicated that they felt uncomfortable disclosing their race/ethnicity in a health-care setting. 12,13,20 Ethnic minorities and immigrants reported feeling the least comfortable providing their race/ethnicity information. For example, Baker et al. 13 and Kandula et al 15 found that Hispanics and Asians were more uncomfortable than whites, and Baker et al 12 found that blacks were more uncomfortable than whites. Comfort was lower for patients who perceived discrimination in general or in medical care. 12,15 Patients reported being the least uncomfortable with the collection of language information. 16,18 However, participants from ethnic or cultural minorities were more likely to be uncomfortable disclosing their preferred language than non-minorities. 16,18 Baker et al 13 found that Hispanics (35.9%) were more likely to be uncomfortable than Chinese-speaking Asians (13.8%). Other studies found that participants of lower socio-economic position were less comfortable disclosing preferred language than those of higher position 18 and males were less comfortable than females. 16 Lofters et al 18 found that patients over the age of 35 years reported more discomfort disclosing race/ethnicity/language compared to their younger counterparts, while Kirst et al 16 found that patients 55 years of age and older were more uncomfortable compared to those aged 18-34.

| Discrimination
Six studies reported that potential discrimination was a concern for patients. [12][13][14][15][16]30 Patients feared that the collection of income information could be used to judge, pity or discriminate against them. 16 In one study, patients identified concerns based on harmful discrimination that they had experienced or witnessed based on socio-economic status. 21 Regarding the collection of religion information, Muslim patients reported feeling negatively stereotyped because of heightened awareness on terrorism. 14 Patients reported being concerned that providing race/ethnicity or language information would be used to discriminate against them or other patients. 12,13 Other reasons were related to concerns that they would be judged negatively based on assumptions or stereotypes related to their race/ethnicity. 21

UK: England and Wales
Clinicians (n = 7), managers (n = 5), nurses (n = 5), information scientists (n = 6) and other staff involved in collecting or using ethnicity data in a health-care setting (n = 7) Health-care staff's perceptions and experiences of ethnicity data collection in health-care settings

USA: Massachusetts
Hospitals (n = 28) to talk to senior executives from the following areas: patient access and registration (n = 8); community, diversity and disparities (n = 7); quality, safety and performance (n = 6); information technology systems (n = 4); and finance (n = 3) Response rate for hospitals was 50% Hospital senior executives reported patient perceptions and experiences with the collection of race/ ethnicity and language information in hospitals Canada: Ontario Public opinion survey: Ontarians 18 y of age and older (n = 1306). 85% were over the age of 35, and 15% identified as an ethnic or cultural minority. Response rate was 8.2%. In-depth interviews: Individuals who had used health-care services within the last 12 mo and lived in Toronto (n = 34). 56% of participants were female, 85% were over the age of 35, and 26% identified as an ethnic or cultural minority Ontarians' and Toronto service users' perceptions on the collection ethnicity, preferred language and household income information in health-care settings.
Telephone survey and in-depth in-person interviews.
(Continues) minority patients, including blacks and Hispanics, were most concerned about discrimination. 12, 13 Kandula et al 15 found that those who perceived discrimination in general and in medical care were more likely worried that their race/ethnicity information would be used to discriminate against them compared to those who did not perceive discrimination. These participants also worried that the government would use race/ethnicity information to find undocumented immigrants. Younger patients in this study were more likely to express concern for discrimination. 15

| Misuse/Privacy concerns
There was a general concern by patients with regard to how the data would be used. 13,15,16,21 In one study, several patients were concerned with the confidentiality of collecting personal information and the security measures taken to protect privacy. 16

| Offence and Other negative reactions
Four studies reported that patients were offended when asked questions about race/ethnicity 21,22,27 or language. 22 In one study, when asked to report their race/ethnicity and language, patients replied "I'm human" and "can't you tell by looking at me?". 22 In another study, patients reported negative experiences providing race/ethnicity data, especially if they did not identify with any of the categories listed and were forced to choose "other." 14 In Jorgensen et al's 28 study, patients reported being very upset that Hispanic or Latinos were not options and patients were required to choose either white or black. Patients were also dissatisfied about having to report ethnicity on repeat visits or without explanation about why these data were being collected. 14, 16 One study reported that patients expressed anger, fear and anxiety with regard to being asked about their ethnicity, especially from participants who identified as members of visible minority groups. 21,28

| Quality of care
Three studies reported that patients felt that disclosing their race/ ethnicity or income information may lead to poorer care as a result of judgements from health-care providers. 16,21,28,30 One study found that 60% of patients were at least somewhat concerned that the collection of race/ethnicity or income information could affect their care with minorities and females being the most concerned. 18

| Providers' perceptions of potential harms for patients
All seven studies reporting providers' perceptions assessed the potential patient harms associated with the routine collection of race/ ethnicity/culture/language data. [23][24][25][26][27][28][29] None of the included studies assessed the providers' perceptions of the potential harms associated with the collection of religion or income data. The potential harms described by providers are grouped using the following four themes: discomforting patients, discriminating against certain patients, misuse and privacy concerns, offending patients and provoking negative reactions, and quality of patient's care.
An overview of providers' perceptions of the various harms for patients in each citation is presented in Table 4.

| Discomforting patients
In two studies, health-care providers reported concerns that asking questions about race/ethnicity/language could make patients uncomfortable or upset. 23

Discrimination
• 46.3% of participants were somewhat or very worried that providing race/ethnicity and language information could be used to discriminate against them. Worry was higher among non-white and multiracial/ethnic participants; 47.7% of Hispanics were very worried, and 23.8% were somewhat worried. There was also a worry that this information could be used to discriminate against others.
Misuse and privacy concerns • 38.5% of participants were very worried, and 18.5% were somewhat worried that the government would use this information to find undocumented immigrants. The level of worry for misuse rose somewhat for whites, Hispanics, English-speaking Asians and multiracial individuals. In general, participants thought that the collection of ethnicity data was important and were happy to disclose their religion and language as long as they did not perceive that they were being stereotyped. Reported harms include the following: Discomfort • Many participants indicated concerns related to feeling discomfort if the purpose of collecting ethnicity data was not fully explained to them and feared being stereotyped.

Discrimination
• 11.1% of participants did not understand the need for ethnicity data collection as they did not believe that it was relevant to treatment or felt that it could be used to be discriminated against. • When asked to report religion, some Muslims felt that they were being stereotyped with heightened awareness on terrorism.
Offence/Negative reactions • Many were dissatisfied about being asked on repeat visits and to report ethnicity without explanation. • Participants reported negative experiences providing ethnicity data as they did not fit in any of the categories which resulted in them choosing "other" leading to feelings of frustration and insignificance. 61% of participants reported a high comfort level for giving registration staff information about their race/ethnicity. Reported harms include the following:

Discomfort
• Hispanics and Asians were significantly less comfortable than whites providing their race/ethnicity information to a registration clerk. • Comfort was significantly lower among those who experienced discrimination and perceived discrimination in general or in medical care.

Discrimination
• Those who perceived discrimination in general and in medical care were more likely to worry that race/ethnicity information would be used to discriminate against them compared to those who did not perceive discrimination. • Black, Hispanic and multiracial individuals were significantly more worried that race/ethnicity information could be used to discriminate against them compared to whites. • Individuals with fair or poor self-reported health were significantly less more worried than those with excellent/very good/ good health. • Increasing age and college graduate were associated with less worry for discrimination.

Misuse and privacy concerns
• Only Hispanics were significantly more worried than whites that race/ethnicity information could be used by the government to find undocumented immigrants. • Perceived discrimination in general and in medical care was associated with higher worry about the government using race/ ethnicity information to find undocumented immigrants.

Kirst et al. (2013) 16
49% of survey participants agreed that the collection of sociodemographic information in a health-care setting was important. Reported harms from survey and interview participants include the following: Discomfort • 67% of participants felt uncomfortable disclosing household income. Participants expressed least comfort providing household income because they did not think that socio-economic position should affect immediate health-care delivery. • 7% expressed discomfort to language collection. • Older participants (55 y of age or older) were more likely to be uncomfortable providing ethnic and language background compared to younger participants (18-34 y of age). • Participants from ethnic or cultural minorities were more likely to be uncomfortable disclosing their preferred language than non-minorities, and males were less comfortable than females. • Participants were least comfortable disclosing information through existing government records and most comfortable disclosing information face to face with a physician.

Discrimination
• Participants feared that income information could be used to judge, pity or discriminate against patients.
Misuse and privacy concerns • 63% of survey participants were concerned about the misuse of data. Younger participants (18-34 y of age) were more likely to be concerned than those 55 y of age or older, and females were more concerned than males. • Over half of participants were concerned with security measures to prevent identity theft and privacy of personal information.
• Several interview participants were concerned with the confidentiality of collecting personal information, and for many, the security of this information was an indication on whether they were willing to disclose.

Quality of care
• Participants believed that disclosing income information could negatively impact their care due to associated discrimination and judgement from the health-care provider. 44% of participants agree with the importance of hospitals collecting sociodemographic data. Reported harms include the following:

Discomfort
• Discomfort was highest for income collection as 65.2% of participants reported being somewhat or very uncomfortable. Discomfort was lowest for language information (6.6%). • Minorities were less comfortable with the collection of preferred language but more comfortable disclosing income than non-minorities. Females were less comfortable providing income than males. Participants of lower SES position were less comfortable with the collection of preferred language than those of higher position, but more comfortable reporting income. • Participants over the age of 35 y reported more discomfort compared to the younger counterparts to the collection of ethnicity, language and income. • Participants were least comfortable disclosing information through existing government records and most comfortable face to face with a physician.
Quality of care • 60% of participants were at least somewhat concerned that the collection of this information could negatively affect their care. Minorities and females were more likely to hold concerns that the collection of sociodemographic information could negatively affect care.

Pinto et al. (2016) 19
Eighteen of 50 who left a comment said that the survey was positive.

Discomfort
• Some respondents (5 of 50 who left a comment, total of 407 respondents) reported feelings of discomfort in responding to the survey, especially to income. They felt that some of the questions were too personal or that they wanted to know that everyone would get the same standard of care no matter what.

Quan et al. (2006) 20
Overall, 84.8% felt comfortable recording their ethnicity in hospital charts. Reported harms include the following:

Discomfort
• 15% of participants reported discomfort providing their ethnicity in hospitals, with immigrants being the most uncomfortable.

Varcoe et al. (2009) 21
Policy decision makers/leaders and health-care workers viewed more positives than community leaders and patients. Reported harms include the following: Altered behaviour • Many indicated that they would not answer questions related to ethnicity in a health-care setting and would lie if they perceived their response would affect their treatment. • Patient participants who identified themselves as aboriginal reported that they would alter their physical appearance such as dress.

Discrimination
• Focus groups and patient participants anticipated the harm of being judged on the basis of assumptions and stereotypes. • Many were concerned that the ethnicity data could influence health-care staff to reinforce stereotypes that linked health behaviours to certain groups. • Adding questions about ethnicity was viewed as a process that could fuel anxieties about inequities and that inequities could manifest in health care because of the negative perceptions or assumptions staff may have towards particular groups. • Patients, focus group participants and some health-care leaders identified concerns based on harmful discrimination, such as being treated rudely after identifying as aboriginal, that they had experienced or witnessed based on perceived socio-economic status or ethnicity.

Misuse and privacy concerns
• Participants also feared and questioned how the information collected might be used and for what aims.
Offence/Negative reactions • Felt offended if asked ethnicity.
• Patients who identified themselves as visible minorities felt anxiety, fear and anger. Concerns were related to further discrimination, marginalization and poorer care.
Quality of care • Focus group and patient participants believed that there was a possibility of receiving poorer care based on judgements from providing race/ethnicity information.

| Discrimination of patients
In two studies, there was a concern among health-care providers that collecting data on race/ethnicity may be used to profile patients and discriminate against them in the provision of care. 26,27 In one study, healthcare providers identified concerns based on harmful discrimination that they had experienced or witnessed based on socio-economic status. 21

| Misuse and privacy concerns
In three studies, health-care providers reported being concerned that patient's race/ethnicity information would not remain confidential or that collecting this information could violate a patient's privacy. 23,26,27

| Offending patients and provoking negative reactions
In four studies, health-care providers reported that patients might be insulted, offended or resist answering questions about their race/ethnicity. [24][25][26][27] Health-care providers in two studies reported concerns about being challenged by patients who want to know the reasons for the collection of race/ethnicity data and worried that this may lead to hostility or negative reactions in patients. 24,29

| Quality of patient's care
In three studies, health-care providers reported being concerned that patients would perceive their care to be different or be worry that they would be treated differently based on their reported race/ ethnicity/culture/language. 26,27,29 Two studies also reported that health-care providers feared that this information would lead to segmenting service delivery and poorer care for their patients. 26,27

| Best Practices: Patient recommendations for sociodemographic data collection
Five studies included patients' recommendations for the collection of sociodemographic data. [12][13][14]16,18 An overview of patients' recommendations for collecting sociodemographic data in each citation is presented in Table 5.

| Who should collect and see sociodemographic data
Patients in four studies reported that they would feel most comfortable disclosing their sociodemographic information face to face to a doctor, preferably to a family physician. 12,14,16,18 However, one study found that 42.3% of patients somewhat or strongly agreed that doctors, nurses or other health-care workers should not see the race/ethnicity information and 22% were unsure. 13 Blacks, Latinos and Chinese were more likely than whites to agree that providers should not see these data. 13

| When to collect sociodemographic data
There was a strong belief among patients in two studies that sociodemographic information should not be collected at every visit 14,16 since some of these characteristics (eg ethnicity) are unlikely to change. 14

| Describing the need for sociodemographic data collection
Baker et al and Baker et al found that nearly all patients agreed that hospitals and clinics should conduct studies to ensure that all patients get the same quality of care regardless of race/ethnicity (96.8% and 87.8%, respectively). 12,13 Patients stated that it was important for health-care settings to clearly explain the need for collecting sociodemographic information, the benefits of collecting these data, how the data will be used and how the data will be kept secure and confidential. 14,16 Participants in one study reported that an educational campaign would be helpful to explain these factors. 16 Two studies assessed changes in patient's comfort levels after hearing an explanation of the reasons for sociodemographic collection. 12,13 One study conducted by Baker et al found that mean comfort levels increased when reasons for data collection were provided with the following statement: "We want to make sure that all our patients get the best care possible, regardless of their race or ethnic background. We would like you to tell us your race or ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care." Comfort levels decreased for non-white participants when the reasons for race/ethnicity data collection were described with this statement: "We take care of patients from many different backgrounds. We would like you to tell us your race or ethnic background so that we can understand our patients bet- ter. This will help us decide who to hire, how to train our staff better, and what health information is most helpful for our patients." However, a later study conducted by Baker et al 13 found that comfort levels increased when race/ethnicity data collection was related to needs assessment using the statement: "We take Offence/Negative reactions • Patients questioned why they were being asked race, ethnicity and language information. Some did not provide the information or were offended by the questions. Comments from patients included "I'm human" and "Can't you tell by looking at me?"

TA B L E 3 (Continued)
TA B L E 4 Providers' perceptions of potential harms for patients Reference

Hasnain-Wynia et al. (2004) 27
70% of participating survey hospitals did not see any drawbacks. Reported harms perceived for their patients included the following: Offending patients/Negative reactions • Participants reported a sense that patients might be insulted, offended or resist answering questions about their race and ethnicity.
Quality of care • There was a concern that patients would perceive their care to be different based on their race or ethnicity information. • Participants were concerned that knowledge of patient's race and ethnicity would lead to segmenting service delivery, poorer care and discrimination. Participants felt patients would feel questions would signify that they will be treated differently than other patients. • Participants felt patients would feel they would receive poorer care if they answer language and culture questions.
Misuse and privacy concerns • There was a fear that the race/ethnicity information collected would not remain confidential.

Discriminating patients
• Participants noted the possibility that collecting data on race and ethnicity may be used to profile patients and discriminate them in the provision of care.

Hasnain-Wynia et al. (2010) 23
Misuse and privacy concerns • Some practices believed that collection of race/ethnicity information could be a violation of privacy.
Discomforting patients • Some practices worried that asking questions about race/ethnicity or language could make patients uncomfortable.

Iqbal et al. (2012) 24
69% of health-care participants believed the collection of ethnicity data was important at a personal level, and 59% thought it was important at an organizational level. Reported harms perceived for their patients include the following: Offending patients/Negative reactions • Staff feared being challenged by patients who wanted to know the reasons for the collection of ethnicity data and the possibility of ensuing hostility or offending patients.

Jorgensen et al. (2010) 28
Hospital executives mentioned staff concerns more frequently than actual patient concerns (17 of 28 hospitals vs 9 of 28 hospitals, respectively). Reported harms perceived for their patients include the following:  25 Offending patients/Negative reactions • Participants expressed concern that patients will feel offended if asked race/ethnicity information in health-care settings. Comfort levels for the collection of sociodemographic data varied among types of sociodemographic data collected. Patients were the most comfortable providing language information and least comfortable providing income information. Expanding the response ranges may help make patients feel more comfortable reporting their income.
Perceived and experienced harms differed across population subgroups. Minority patients perceived or experienced more harms when disclosing sociodemographic information and had lower trust in their health-care provider than whites, making them vulnerable to health inequities. 12 The studies reported that these harms likely stem from the experienced discrimination faced by racial/ethnic minorities.
Fixed categories related to race/ethnicity assume that patients can fit themselves into one particular category and may isolate those who do not identify with any of the categories offered. 31 Using an openended question for the collection of race/ethnicity information may help to alleviate these concerns and reduce the rates of missing or unusable data. 19,31 The studies included in this review suggest that harms may be mitigated by sufficiently explaining the need for and benefits of collecting sociodemographic data, how the data will be used and how the data will be kept secure and confidential. An educational campaign may help to address these factors. Additionally, participants in the included studies reported that they would prefer to disclose their sociodemographic information face to face to a doctor.
Health-care providers reported similar concerns with the collection of sociodemographic information as patients. The studies that assessed health-care providers' opinions on potential harms focused on race/ethnicity/culture/language; it is likely that the same concerns apply for the collection of religion and income data. 32 Health-care providers may not be fully prepared to ask their patients about sociodemographic information and to address patient concerns with this data collection. It may be Reference Providers' perceptions on outcomes for patients Nerenz et al. (2004) 26 72% of participants that collected race/ethnicity data did not see any drawbacks to collecting the data. 44% of hospitals that did not collect race/ethnicity data did not see any drawbacks. Reported harms perceived for their patients include the following: Offending patients/Negative reactions • Participants sensed that patients might be insulted or offended or resist answering questions about their race and ethnicity.
Quality of patient's care • There was a concern that patients will perceive their care will be different based on the race or ethnicity information. • Participants felt patients would feel they were being treated differently from other patients.
• Concern that knowledge of race/ethnicity would lead to segmenting service delivery, discrimination and multiple standards of care.
Misuse and privacy concerns • There was a fear that the information collected would not remain confidential.
Discriminating patients • Participants also mentioned the possibility that collecting data on race and ethnicity might be used to profile patients and discriminate in the provision of care. Who should collect/see data • For participants who reported that they were not fully comfortable providing race/ethnicity information to a clerk, they reported feeling more comfortable providing this information to a doctor (54.4%) or nurse (42.0%).
Need for collection • 96.8% of participants somewhat or strongly agreed that hospitals and clinics should conduct studies to ensure that all patients get the same quality of care regardless of race/ethnicity.

Statement increasing comfort
• Comfort levels increased when participants heard the statement: "We want to make sure that all our patients get the best care possible, regardless of their race or ethnic background. We would like you to tell us your race or ethnic background so that we can review the treatment that all patients receive and make sure that everyone gets the highest quality of care." Statement decreasing comfort • Mean comfort levels decreased for non-white participants after hearing the statements: "Several government agencies recommend that we collect information on the race and ethnic backgrounds of our patients as part of a national effort to make sure all patients have access to quality health care. Please tell me your race or ethnic background," and "We take care of patients from many different backgrounds. We would like you to tell us your race or ethnic background so that we can understand our patients better. This will help us decide who to hire, how to train our staff better, and what health information is most helpful for our patients."

Baker et al. (2007) 13
Who should collect/see data • 42.3% of participants somewhat or strongly agreed that doctors, nurses and other health-care workers should not see the collected race/ethnicity information. 22% of participants were unsure. Blacks, Latinos and Chinese were more likely than whites to agree that providers should not see these data.
Need for collection • 87.8% of participants somewhat or strongly agreed that hospitals and clinics should conduct studies to ensure that all patients get the same quality of care regardless of race/ethnicity.

Statement increasing comfort
• Comfort levels increased the most when participants heard the statement: "We take care of patients from many different backgrounds. Please tell me your race or ethnic background so we can understand more about the patients we serve. This will help us train our staff better and improve our health education materials." The magnitude of comfort was higher for Spanish-speaking Latinos and Chinese-speaking Asians.

Statement decreasing comfort
• Comfort decreased for approximately one-third of participants after hearing the statement: "We want to make sure all our patients get the best care possible. We would like you to tell us your race or ethnic background so we can review the treatment that patients receive and make sure everyone gets the highest quality care. Only a few people here will be able to see this information. The doctors and nurses caring for you will not be given this information."

Iqbal et al. (2012) 14
Who should collect/see data • Participants believed that general practitioners should be collecting the information.
When to collect data • There was a strong belief that the information should not be collected every visit as ethnicity is unlikely to change.
Need for collection • They indicated that health-care settings should clearly explain the need for collection, the benefits, how data will be used and how it will be kept secret/confidential. English language studies, we only included English papers which may limit the generalizability of our findings to other non-English settings.
Finally, we did not assess the risk of bias of the studies included in this rapid review. The study designs included in this review were almost all descriptive studies utilizing survey methods and are therefore likely to have a high risk of bias. Overall, most of the included studies had a large sample size, but the reported non-response rate of studies was relatively high, ranging from 27.3% to 96.9%. 18,29 However, it is possible that patients who were opposed to participating were more likely to be opposed to the collection of sociodemographic information due to negative attitudes or experiences. This would likely cause our results to underestimate the potential harms. Additionally, the majority of the studies included in this review reported only on perceived harms (12 studies), while three studies reported both perceived and experienced harms and only four studies focused on harms experienced by patients or providers.
The results of this review provide insight into the potential harms perceived or experienced by patients and the concerns of health-care providers with regard to the routine collection of race/ ethnicity/culture/language, religion and income data. We have also identified some recommended practices for how, when and by whom these data should be collected. The results of this review can be used to inform the design of data collection procedures, including who asks for the information, how the information is categorized and under what circumstances it is collected. Further research is needed to explore how perceived potential harms relate to actual harms experienced by patients as well as strategies to reduce the risk of patient discomfort and distress with providing this information.

| CON CLUS ION
The collection of sociodemographic data, notably race/ethnicity/ culture/language, religion and income, is necessary to guide clinical decisions and reduce health inequities. Although the studies included in this review suggest that the public generally supports the collection of sociodemographic information, there are potential harms associated with collecting this information in a health-care setting. The associated harms, both perceived and experienced, were most pronounced for minority population subgroups and for the collection of income information. More research is needed on strategies to overcome the potential harms associated with collecting race/ethnicity/culture/language, religion and income data in a health-care setting. However, the studies included in this review indicate that harms may be mitigated by sufficiently educating health-care providers and patients on the reasons for the collection of this information.

CO N FLI C T S O F I NTE R E S T
None to declare. Who should collect/see data • 29% of survey participants indicated that they were most comfortable providing sociodemographic information face to face with a family physician, 22% face to face with a hospital clerk and 20% on a form in a hospital, 14% survey through mail or Internet and 12% disclosure through existing government records. 3% indicated none of the above. • Interview participants also indicated that their preferred method to disclose sociodemographic information would be face to face with a family physician due to the ongoing relationship and trust.
When to collect data • Interview participants indicated that they would prefer that personal characteristics would not be asked at every health-care visit.
Need for collection • Interview participants were more open to disclosing information if there was sufficient explanation for the use of the information. Simply saying the information is needed is not enough patients should see how the information is being used, how it benefits them personally and the population as a whole, security and privacy measures taken related to the use and storage and confidentiality. They believed that an educational campaign would be beneficial explaining the purpose of the information collection, use, security and privacy.

Lofters et al. (2011) 18
Who should collect/see data • Comfort level for the collection of information was the highest for face-to-face interviews with a family physician (67.7%), followed by form in a hospital (49.3%), face to face with a hospital clerk (47.6%), survey by mail or on the Internet (31.3%) and accessing information from existing government records (28.6%). 5.6% indicated none of the above.