“Clearly they are in the circle of care, but . . .”: A qualitative study exploring perceptions of personal health information sharing with community pharmacists in an integrated care model

Abstract

Background: Ontario’s Health Links approach to care is an integrated care model designed to optimize care for patients with complex needs. Currently, community pharmacists have no formalized role. This study aimed to explore stakeholders’ perceptions about privacy and its impact on community pharmacists’ involvement with integrated care models. Methods: A qualitative study using semistructured telephone-based interviews was conducted. Participants worked in Ontario as pharmacists, providers in Health Links or team-based models or decision-makers in Health Links or health regions. Thematic analysis followed the Qualitative Analysis Guide of Leuven. Results: Twenty-two participants were interviewed, and all but one commented on privacy or information sharing in integrating community pharmacists with integrated care models. The 4 themes identified were as follows: 1) what does the circle of care look like? 2) value of sharing information, 3) uncertainty of what information to share and 4) perceptions on how to share information. Interpretation: The concerns surrounding privacy of personal health information and who is included in the circle of care represented an important barrier for integration. Enablers to mitigate privacy concerns included relationship building between community pharmacists, patients and other health care professionals and mutual access to information-sharing platforms such as electronic health records. Conclusion: Providers’ and decision-makers’ perceptions about community pharmacists and privacy affect information sharing and are incongruent with Ontario’s Personal Health Information Protection Act. Education is needed for health care professionals on legislation, especially as health systems move towards integrated care models to improve care. Can Pharm J (Ott) 2020;153:xx-xx.

Preferences for onward health data use in the electronic age among maternity patients and providers in South Africa: a qualitative study

“… 17 Our findings echo those observed elsewhere, which suggest that patients and providers alike were supportive of patient-level data use for research however, they were not well informed about the conditions or specifics of data use, sharing, or storage. 18 A number of studies have noted concerns that providers and patients may have around the security and vulnerability of health data; 15 , 16 , 19 provider reluctance given the time-trade-offs and existing clinical demands; 16 harming patient-provider relations; 18 , 20 and fairness in how data would be used. 17 In South Africa, access to and use of patient data is governed by well-established procedural and structural access controls, including data within the Western Cape’s health information exchange.…”

Balancing stakeholder interests and paradoxes in health data sharing within health ecosystems

“…Personal health data has not yet been fully utilised for use in developing health innovations because of barriers to secondary use of the health data, which 11. 4.2024 FinJeHeW 2024;16 (1) include ethical issues, legal uncertainty, the burden of complaints [3], privacy, information security, discrimination, the right to access data, and the abuse of data [4][5][6][7][8][9]. These challenges are also associated with data management and security when combining data from multiple sources, e.g., registries, biobanks, and sensors, and missing a trustful platform for storing, managing, and controlling the data among different stakeholders [10].…”

“…These challenges are also associated with data management and security when combining data from multiple sources, e.g., registries, biobanks, and sensors, and missing a trustful platform for storing, managing, and controlling the data among different stakeholders [10]. Moreover, sharing health data for secondary use by companies to develop innovative medical products is relatively low [9,10] as people fear that companies may leak their health data due to a lack of privacy control and for commercial purposes by making profits at the expense of the public. People may doubt the accuracy and transparency of big data solutions.…”

Understanding health information exchange processes within Canadian long‐term care: A scoping review

“…Residents of LTCFs commonly live with one or more chronic health conditions, with approximately 90% experiencing some level of cognitive impairment (Kruse et al, 2017; Wilkinson et al, 2019). The circle of care involves all practitioners and care staff, herein called providers , responsible for providing services to support the health of a LTCF resident, including providers who may be either internal or external to the LTCF (Rolf von den Baumen et al, 2020). Substantial amounts of health information is generated by LTCF providers documenting observations, assessments and care provision; this information must be shared and acted upon among the various regulated care providers (RCPs) and unregulated care providers (UCPs) in the circle of care who may be either on or off site (Alexander et al, 2020).…”