Demographic and Social Needs Data Collection: A Guide for Patients and the Public
You are being asked to complete a questionnaire about your demographics and social needs - learn about why this is important to your care.
About the questions
Why am I being asked these questions?
These questions aim to help your clinic and care provider understand who you are so they can strive to give you better care.
On a larger scale, it could be used to identify social determinants of health to improve health equity in your community or region. This information can help make sure that everyone, regardless of who they are and where they are can get the support they need to be healthy and well. It is important to ask everyone these questions to make healthcare inclusive, accessible and fair for all.
What kind of questions are being asked?
The SPARK Tool is one example of a sociodemographic data collection tool that asks questions about your personal characteristics including: age, language preference, if born in Canada, race, disability, gender identity, and sexual orientation.
It also asks questions about your social situation including: education, ability to pay for basic needs, access to food and medication, housing situation, transportation, utilities, and phone and internet access, access to social or family supports, and employment status.
Importance for care
Why is this relevant to my care?
It is important for us know who we serve and whether patient and client needs match the care we provide.
This information will help us understand and plan care not only for your future visits but for other patients and clients who may have similar needs as yours.
Do I have to answer the questions?
No. The questions are voluntary, and you can choose ‘prefer not to answer’ to any or all questions. This will not affect your ability to access care.
How will you use this information?
Your healthcare provider (e.g., family doctor, nurse practitioner) may use your information to improve your individual care. Members of your healthcare team may refer you to services, provide you with information, or identify unique needs such as:
Language translation
Treatment programs
Accommodation for disabilities
Financial and similar supports related to housing, medication, utilities, and food.
The healthcare clinic may also use it to develop programs to address patient needs. If used for planning or research purposes, your data will be anonymous and combined with other patients.
Data privacy and use of information
Who can see this information?
We take your privacy very seriously. This information will not be visible to anyone outside your healthcare team (e.g., family doctor, nurse practitioner) and will be protected like all your other health information.
If used in research or quality improvement, the information from all patients and clients will be combined and anonymous, and researchers will not be able to identify any individual patients or clients.
Is it legal to ask these questions?
Yes. It is legal to ask these questions. The safe collection of this data is also encouraged by the Canadian Public Health Association.
We believe that we cannot fully understand the healthcare experiences of patients and clients without knowing more about them.
Definitions
What are the social determinants of health?
Social and financial conditions that impact the health of individuals, families, and communities. These include access to housing, education, or income security.
According to the World Health Organization, these social and economic factors can affect the health outcomes of individuals and groups more than genes or lifestyle choices. By understanding the social determinants of health affecting patients, we can better serve them and address health inequities.
What is health equity?
Health equity means helping people to reach their full health potential and receive high quality care that is fair and appropriate, regardless of where they live, who they are, and what they are.
Instead of assuming that everyone is the same, like equality does, equity recognizes that there are differences and barriers for certain groups that affect their access to care.
Questions and suggestions
If you have questions or concerns about the information you provide in the SPARK Tool (or other sociodemographic questionnaire) or how your healthcare team may use it, please reach out directly to your healthcare team at the clinic.
Information on this page has been adapted from materials and resources developed by SPARK Study Team members across Canada, patient partners, and Upstream Lab at St. Michael's Hospital, Unity Health Toronto. If you have suggestions for content to add to this page that would be useful for other patients, please email info@deependcanada.ca.