Francis Lau PhD, FCAHS, Professor
School of Health Information Science, University of Victoria
[email protected] @francislau1 #HealthTerminologyStandards #CCHIMCTSS #HINF
Does your organization currently collect social determinants of health (SDOH) data? If so, what types are collected and how are they used to inform health-care-intervention decisions? If not, is there a plan in place to introduce SDOH as part of routine data collection?
In order to address systemic inequities that exist in Canada’s current health system, these questions are being raised increasingly by health organizations across the country.
In my April 16, 2020, blog, I mention several SDOH initiatives underway in Canada and the United States:
- A study by Pinto, et al.,  to reduce inequities through routine collection of SDOH data in a family medicine clinic
- The PROGRESS framework by O’Neill, et al.,  to assess the effects of interventions on health equity. (PROGRESS stands for: Place of residence; Race/ethnicity/culture/language; Occupation; Gender/sex; Religion; Education; Socioeconomic status; and Social capital).
- A report on stratifiers for measuring health inequity from the Canadian Institute for Health Information (CIHI) 
- The Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences (PRAPARE) initiative to assist health organizations in collecting the data needed to better understand and act on patients’ SDOH 
Currently, a growing number of initiatives related to the collection and use of SDOH are underway—in particular, SDOH data standards that are being implemented as part of digital health systems. A few examples include:
- A multi-year study funded by the Canadian Institutes for Health Research (CIHR) called the SPARK Study, which is designed to develop and test a multilingual national standard and implementation guidelines for socio-demographic data collection in primary care. (SPARK stands for Screening for Poverty and Related social determinants and intervening to improve Knowledge of and links to resources). The questionnaire used in this study has 14 standardized questions and is currently being validated in five Canadian provinces. 
- CIHI has published a set of proposed standards for race-based and Indigenous identity data collection and health reporting for discussion and feedback. The proposed race-based standard is based on the Ontario Anti-Racism Directorate’s race data standards and Upstream Lab’s race data collection recommendations. 
- The Gravity Project is co-led by the Social Interventions Research and Evaluation Network (SIREN) and EMI Advisors LLC. Its goal is to work with stakeholders across the United States to develop and test consensus-based standards to facilitate the capture and exchange of SDOH data in different health and social care settings. The project deliverables include the development of standards to support SDOH data capture and exchange, such as common SDOH data elements, terminologies, value sets and data exchange specifications. 
- HL7 Fast Healthcare Interoperability Resources (FHIR) SDOH Clinical Care Implementation Guide (IG) is the technical part of the Gravity Project that is focused on describing how SDOH and relevant information can be shared with outside organizations to coordinate services that address SDOH-related needs. The IG includes detailed specifications of patient stories, FHIR-based questionnaires, questionnaire response-mapping instructions, security protocols, and FHIR artifacts. 
The latest effort, planned for June 2021, is the launch of a new Canadian SDOH Working Group for people who are interested in, involved with, or affected by the planning, implementation and use of SDOH data in digital health systems. Co-leading this new SDOH Working Group are Marcy Antonio and Annalijn Conklin with the support of Canada Health Infoway. Antonio Conklin is a PhD candidate in Interdisciplinary Studies at the University of Victoria (UVic), and Annalijn Conklin is assistant professor in the Faculty of Pharmaceutical Sciences at the University of British Columbia (UBC). The SDOH Working Group is to meet monthly with presentations from leaders in SDOH. To kick-off the SDOH Working Group, a half-day virtual mini-conference is also planned for May 19, 2021, with presentations from three SDOH research-practice leaders. Details of the working group and the forthcoming mini-conference will be available soon.
There is much to do to reduce systemic inequities in the Canadian health system. We hope you can join us to help make a difference through this important initiative. Contact us if you wish to learn more about this topic.
- Pinto AD, Glattstein-YG, Mohamed A, Bloch G, Leung FH & Glazier RH. Building a foundation to reduce health inequities: routine collection of sociodemographic data in primary care. Journal of American Board of Family Medicine 2016; 29(3):348-55.
- O’Neill J, Tabish H, Welch V, Petticrew M, Pottie K, Clarke M, et al. Applying an equity lens to interventions: using PROGRESS ensures consideration of socially stratifying factors to illuminate inequities in health. Journal of Clinical Epidemiology 2014; 67:56-64.
- Canadian Institute for Health Information. In Pursuit of Health Equity: Defining Stratifiers for Measuring Health Inequity. April 2018.
- National Association of Community Health Centers. PRAPARE – Protocol for Responding to and Assessing Patients’ Assets, Risks and Experiences. [Internet]. Bethesda (MD): NACHC; c 2018 [cited 2018 Feb 5]. Available from: http://www.nachc.org/research-and-data/prapare/
- The Upstream Lab. SPARK Study – Screening for Poverty And Related social determinants and intervening to improve Knowledge of and links to resources (SPARK). Available from https://upstreamlab.org/spark-study/
- Canadian Institute for Health Information. Proposed Standards for Race-Based and Indigenous Identity Data Collection and Health Reporting in Canada. Ottawa, ON: CIHI; 2020. Available from https://www.cihi.ca/sites/default/files/document/proposed-standard-for-race-based-data-en.pdf
- The Gravity Project. Available from https://thegravityproject.net/
- HL7 International. SDOH Clinical Care 0.1.0 – STU 1. Available from http://hl7.org/fhir/us/sdoh-clinicalcare/2021jan/