ABSTRACT
BACKGROUND: Healthcare organizations are increasingly exploring ways to address the social determinants of health. Accurate data on social determinants is essential to identify opportunities for action to improve health outcomes, to identify patterns of inequity, and to help evaluate the impact of interventions. The objective of this study was to refine a standardized tool for the collection of social determinants data through cognitive testing. METHODS: An initial set of questions on social determinants for use in healthcare settings was developed by a collaboration of hospitals and a local public health organization in Toronto, Canada during 2011-2012. Subsequent research on how patients interpreted the questions, and how they performed in primary care and other settings led to revisions. We administered these questions and conducted in-depth cognitive interviews with all the participants, who were from Saskatchewan, Manitoba, Ontario, and Newfoundland and Labrador. Cognitive interviewing was used, with participants invited to verbalize thoughts and feelings as they read the questions. Interview notes were grouped thematically, and high frequency themes were addressed. RESULTS: Three hundred and seventy-five individuals responded to the study advertisements and 195 ultimately participated in the study. Although all interviews were conducted in English, participants were diverse. For many, the value of this information being collected in typical healthcare settings was unclear, and hence, we included descriptors for each question. In general, the questions were understood, but participants highlighted a number of ways the questions could be changed to be even clearer and more inclusive. For example, more response options were added to the question of sexual orientation and the "making ends meet" question was completely reworded in light of challenges to understand the informal phrasing cited by English as a Second Language (ESL) users of the tool. CONCLUSION: In this work we have refined an initial set of 16 sociodemographic and social needs questions into a simple yet comprehensive 18-question tool. The changes were largely related to wording, rather than content. These questions require validation against accepted, standardized tools. Further work is required to enable community data governance, and to ensure implementation of the tool as well as the use of its data is successful in a range of organizations.