public opinion on sociodemographic data collection in ontario healthcare settings ketan shankardass,...

Public opinion on sociodemographic data collection in Ontario healthcare settings

KETAN SHANKARDASS, PhD, Research AssociateCentre for Research on Inner City Health

PUBLIC OPINION ON SOCIODEMOGRAPHIC DATA COLLECTION IN ONTARIO HEALTHCARE SETTINGS

The need to start measuring and monitoring equity in healthcare settings in Canada

•Canada’s Chief Public Health Officer has emphasized the importance of tools for equity measurement

•CIHR has prioritized the development of measurement approaches to health equity

•Senate Subcommittee on Population Health: “[Action on health equity] must rest on the development of a sound database infrastructure that will ensure the collection, monitoring, analysis and sharing of population health and health disparity indicators [and Canada] lacks strong data at the local level.”

•In 2009, the Toronto Central Local Health Integration Network (TC-LHIN) required hospitals to begin reporting on equity initiatives.


“The ideal approach to measuring equity of care is to link patient-level health data to patient-level sociodemographic data. New data collection and data management systems will be needed to fully assess equity of care in hospital settings.”

CRICH 2009


Why investigate public opinion?

•Mixed public support for equity-oriented collection of patient-level sociodemographic data in Alberta and British Columbia

•The disclosure of accurate personal information by health care system users requires public support and compliance

•The types of data we need to collect reflect sensitive topics

•There are fundamental implications for patient privacy

•Public opinion drives political will

•Organized, effective and acceptable processes of data collection

•When and how this information is collected has significant implications for the future of data systems, e.g. electronic health records


Phase 1. Public Opinion Survey

•We surveyed Ontarians regarding their opinions on the collection of personal information (such as income, education, race/ethnicity, sexual orientation, language) by hospitals “to monitor the quality of the services they provide“

• Perceived importance of, and concern over, the collection of personal sociodemographic information by hospitals

• Public preference for practical approaches to the future collection of such information

•Telephone interview in November 2009 using random digit dialing in a representative sample of 1,306 Ontarians aged 18 years or over


ONTARIO% (N)

Yes 75.9 (992)No 24.1 (314)

Male 48.0 (627)Female 52.0 (679)

18 to 34 28.2 (368)35 to 54 40.0 (523)55+ 31.8 (416)

Yes 78.0 (999)No (Entry >10 years ago) 16.9 (216)No (Entry ≤10 years ago) 5.1 (66)

Yes 17.6 (210)No 82.4 (982)

Yes 29.6 (370)No 70.4 (880)1 An urban core whose population is at least 100,000 based on the 2006 Census.2 Did not report Canadian, American or European (including Russian) ethnic ancestry.3 Participant either had a high school diploma as their highest attained education level, or a household income of under $40,000, or was unemployed at the time of survey.

Residence in a Census Metropolitan Area1

Gender

Age group

Born in Canada

Ethnic or cultural minority2

Low socioeconomic position3

Characteristics of study participants were similar to the Ontario general population

(Kirst et al, unpublished data)


Percent disagreement with the statement:“It is important for hospitals to collect information from patients about personal characteristics like ethnic background, family

income, and language of preference”



Percent uncomfortable with the collection of information on various patient sociodemographic characteristics by hospital

% U

ncom

fort

able



Percent concerned with the statement, “How concerned would you be that the collection of this type of information could negatively

affect the care that you or others receive?”



Dot map indicating relatively unfavorable responses about the collection of patient sociodemographic information in hospitals by

study participant subgroups1

Ethnic background

Preferred language

Citizenship or immigration

status

Current household

incomeEducation

backgroundSexual

orientation

Yes

No •

Yes • •

No •

18 to 34 •

35 to 54 • • • • •

55+ • • • •

Male •

Female • • •

Yes • •

No

Yes • •

No (Entry >10 years ago) • •

No (Entry <10 years ago)

Relative disagreement about

the importance of collection

Relative discomfort with the specific collection of:

Relative concern collection could negatively affect

care receivedStudy participant categoriesResidence in a Census

Metropolitan Area2

Low Socioeconomic

Position4

Birth in Canada (Period of immigration)

1Dots indicate a statistically significant difference between sugroups within a category, based on a Chi-Square test using an alpha level of 0.05.2An urban core whose population is at least 100,000 based on the 2006 Census.3Did not report Canadian, American or European (including Russian) ethnic ancestry.4Participant either had a high school diploma as their highest attained education level, or a household income of under $40,000, or was unemployed at the time of survey.

Ethnic or culturally

minority3

Age group

Gender



Percent comfortable with various approaches for the collection of sociodemographic information from patients

% C

omfo

rtab

le



Phase 2. In-depth Interviews (preliminary analysis/unpublished data)

34 interviews

Young and old

Male, female, transgender

Heterosexual and LBGTQIA

Married and single

Canadian-born and recent/long-term immigrants

Ethnic and cultural backgrounds

Across levels of educational attainment, employment status and type, and household income


•Hesitation about disclosure seemed to be related to three main issues:

3) Lack of trust in how the government would use such information

“…a lot of people are, you know, very weary of institutions and government, and you know, all those kind of things…so they’re assuming that it’s going to be (misused)…unless you prove it to me and then I am still going to keep watch.”

Problems

•Most people admit they would (and in some cases have) shared some or all of these data when asked, but still hesitation to share income and education level (followed by sexual orientation and immigrant status)


1) Concern or shame about feeling pitied, judged or abused given status vis a vis perceived social norms

“I think probably people with a lower income are a little bit more weary…a lot of clients and people that I have known who…have been beaten around a bit by the system so they’re a little bit weary even though they are accessing the system and sometimes they’ll feel that (this information) could be used against them”


2) A lack of understanding of the relevance of data collection - a personal view of health care and a belief in universal coverage

“Hmm, I don’t think it’s important (for hospitals to know this information), like I said…we’re all people, we all need care…but if…it is ethnic you know, maybe that doctor does know more about you know, if there’s certain diseases…in that ethnic…background then others...maybe he is better qualified.”


Solutions

•If patients understood how (and why) this data was going to be used – measuring and monitoring of health equity at the population level – they would be more prone to disclosure.

• Need more awareness that health inequities exist

•1 in 4 believe that all people in Ontario are equally healthy

•Almost 1 in 2 don’t think that there are income disparities

•8 in 10 think it is important to narrow such differences in health

(Quiñonez et al, unpublished data)

•Those who did recognize the population health perspective tended to have experience with these issues, e.g., social worker, graduate student, therapist, activist, pharmacist


CRICH 2009


Solutions

•Those who made the connection during the interview appeared to prefer:

• Anonymous collection and use;

• Secure data storage;

• Collection and storage, update - not asked every time they visit a new health provider

•Implications for EHRs?

public opinion on sociodemographic data collection in ontario healthcare settings ketan shankardass,...

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