Sociodemographic Data Collection in Canadian Healthcare Settings

Aisha Lofters MD CCFP PhDSt. Michael’s Hospital, University of Toronto

Outline

• Current State

• Public opinions on sociodemographic data collection in healthcare settings

• Future State?

Current State

• Collection of individual-level sociodemographic data not routine in healthcare in Canada

• Postal code used as proxy for income (and other characteristics)

• Very little race/ethnicity data used in healthcare context

Public opinions on sociodemographic data collection in healthcare settings1,2

• Surveyed 1,005 Canadians and 1,306 Ontarians aged 18 years and over

• Random digit digit dialing

• Collection of personal information during hospital encounters, to monitor who they are serving and the quality of care they provide

Public Opinions on Data Collection

1)Agreement with the importance of collecting sociodemographic information

2)Comfort with the collection of information about particular characteristics

3)Concern that the collection of information could negatively affect care

Public Opinions on Data Collection

• Comfort with five scenarios for the collection of such information: 1)Face-to-face reporting with a hospital clerk2)Face-to-face reporting with a family physician3)Filling out a form at a hospital4)Taking a survey by mail or on the internet5)Having information accessed from existing government

records

It is important for hospitals to collect information from patients about personal

characteristics like ethnic background, family income, and language of preference

CANADA ONTARIO

CANADA ONTARIO

How concerned would you be that the collection of this type of information could

negatively affect the care that you or others receive?

If the government asked hospitals to look for ways to collect this information, which of the following methods would you be

comfortable with?

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

% discomfort

Qualitative Findings1

• 34 individuals who had used healthcare services within the last 12 months and lived in Toronto, Ontario

• Public opinion survey research company• 56% female• 68% born in Canada• 26% visible minorities• 24% low socioeconomic position

Qualitative Findings

• And why do they need to know it?…Now I have 6 or 10 different people knowing about my life… about how much I make, where I went to school because a lot of people, we are in a society where you are judged about who you are, what you do, where you came from, what language do you speak …what do you do for a living and how much do you make.

Qualitative Findings

• It depends on why they want it… that would be my first question. But I have probably given all that, information in the hospital, before surgery…automatically because you get these forms thrown at you… and I think I have probably filled them out, just done it… not even thinking, and then I’ve thought afterwards, what the heck did they need my income for? Because they don’t… as far as I am concerned. But give me a good reason you know, tell me why.

Qualitative Findings

• I don’t think I would have a concern about it being misused if I was told up front that this information is being gathered in order to optimize health services, but I certainly would have a concern that this information would be used for purposes other than the venue for which you’re gathering it…

Qualitative Findings

• I don’t think that you can guarantee 100% absolutely privacy, I don’t think that’s ever going to happen because there’s breach of privacy all the time…our information is stored on computers, people have the ability to access these computers whether you’ve got 7 passwords… or not, there are always going to be people who can access the information.

8 mandatory questions1. Language (speaking to

health care provider)2. Born in Canada3. Racial or ethnic group4. Illness or disability5. Gender6. Sexual orientation7. Family income8. No. income supports

3 optional questions1. Language (reading

healthcare info)2. Religious or spiritual

affiliation3. Housing

http://torontohealthequity.ca/

References

• 1) Kirst M, Shankardass K, Bomze S, Lofters A, Quinonez C. Sociodemographic data collection in Ontario healthcare settings for health equity measurement: A mixed methods study examining public opinions. IJEqH. 2013 Aug 30, 12:75. DOI: 10.1186/10.1186/1475-9276-12-75.

• 2) Lofters A, Shankardass K, Kirst M, Quinonez C. Sociodemographic data collection in Ontario healthcare settings: An examination of public opinions. Med Care. 2011 Feb; 49(2): 193-9.

References

• 3) Shankardass K, Lofters A, Kirst M, Quiñonez C. Public awareness of income-related health inequalities in Ontario, Canada. Int J Equity Health. 2012 11:26.

• 4) Lofters A, Slater M, Kirst M, Shankardass K, Quinonez C. How do people attribute income-related inequalities in health? A cross-sectional study in Ontario, Canada. Plos One 2014. DOI: 10.1371/journal.pone.0085286.

References

• 5) Lofters AK, Schuler A, Slater M, Baxter NN, Persaud N, Pinto AD, Kucharski E, Davie S, Nisenbaum R, Kiran T. Using self-reported data on the social determinants of health in primary care to identify cancer screening disparities: Opportunities and challenges. BMC Fam Pract. 2017; 18:31. DOI: 10.1186/s12875-017-0599-z.

• 6) Kirst M, Shankardass K, Singhal S, Lofters A, Muntaner C, Quinonez C. Addressing health inequities in Ontario, Canada: What solutions do the public support? BMC Public Health. 2017; 17:7. DOI: 10.1186/s12889-016-3932-x.

Acknowledgements

• Carlos Quinonez

• Maritt Kirst

• Ketan Shankardass

• Toronto Central Local Health Integration Network Health Equity Council

• Centre for Urban Health Solutions, St. Michael’s Hospital

Participant demographicsCANADA ONTARIO

% (N) % (N)

Residence in a Census Metropolitan Area1

Yes 65.9 (662) 75.9 (992)No 34.1 (343) 24.1 (314)GenderMale 48.7 (489) 48.0 (627)Female 51.3 (516) 52.0 (679)Age group18 to 34 27.4 (276) 28.2 (368)35 to 54 39.9 (401) 40.0 (523)55+ 32.7 (328) 31.8 (416)Born in CanadaYes 83.7 (820) 78.0 (999)No (Entry >10 years ago) 12.2 (120) 16.9 (216)No (Entry ≤10 years ago) 4.1 (40) 5.1 (66)Ethnic or cultural minority2

Yes 13.5 (127) 17.6 (210)No 86.5 (818) 82.4 (982)Low socioeconomic position3

Yes 44.7 (441) 29.6 (370)No 55.3 (545) 70.4 (880)1An urban core whose population is at least 100,000 based on the 2006 Census.2Did not report Canadian, American or European (including Russian) ethnic ancestry.3Participant 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.

Dot map indicating relatively unfavorable responses about the collection of patient sociodemographic information in hospitals by Ontario subgroups1.

Relative disagreement

about importance of

collection

Relative concern

collection could negatively affect

care received

Relative discomfort with specific collection of:

Study participant categoriesEthnic

backgroundPreferred language

Citizenship or immigration

status

Current household

incomeEducation

backgroundSexual

orientation

Residence in a CMA2

YesNo •

Ethnic or culturally minority3

Yes • •

No • •

Age group18 to 34 •

35 to 54 • • • • •

55+ • • • •

Gender Male •

Female • • •Low

Socioeconomic Position4

Yes • •

NoBirth in Canada

(Period of immigration)

Yes • • •

No (>10 years) • • •

No (≤10 years)1Dots indicate a statistically significant difference between sugroups within a category, based on a Chi-Square test using an alpha level of 0.10.2Census Metropolitan Area, an 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.