scholarly journals “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

2020 ◽  
Vol 153 (6) ◽  
pp. 378-398
Author(s):  
Teagan Rolf von den Baumen ◽  
Jennifer Lake ◽  
Amanda C. Everall ◽  
Katie Dainty ◽  
Zahava Rosenberg-Yunger ◽  
...  
Keyword(s):  
Information Sharing ◽  
Integrated Care ◽  
Health Information ◽  
Health Care Professionals ◽  
Community Pharmacists ◽  
Personal Health Information ◽  
Personal Health ◽  
Care Models ◽  
Circle Of Care ◽  
Integrated Care Models

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.

scholarly journals Analysis of College Students� Personal Health Information Activities: Online Survey (Preprint)

2017 ◽  
Author(s):  
Sujin Kim ◽  
Donghee Sinn ◽  
Sue Yeon Syn
Keyword(s):  
College Students ◽  
Health Care ◽  
Health Information ◽  
Information Management ◽  
Health Care Professionals ◽  
Online Survey ◽  
Age Distribution ◽  
Principal Component ◽  
Personal Health Information ◽  
Personal Health

BACKGROUND With abundant personal health information at hand, individuals are faced with a critical challenge in evaluating the informational value of health care records to keep useful information and discard that which is determined useless. Young, healthy college students who were previously dependents of adult parents or caregivers are less likely to be concerned with disease management. Personal health information management (PHIM) is a special case of personal information management (PIM) that is associated with multiple interactions among varying stakeholders and systems. However, there has been limited evidence to understand informational or behavioral underpinning of the college students’ PHIM activities, which can influence their health in general throughout their lifetime. OBJECTIVE This study aimed to investigate demographic and academic profiles of college students with relevance to PHIM activities. Next, we sought to construct major PHIM-related activity components and perceptions among college students. Finally, we sought to discover major factors predicting core PHIM activities among college students we sampled. METHODS A Web survey was administered to collect responses about PHIM behaviors and perceptions among college students from the University of Kentucky from January through March 2017. A total of 1408 college students were included in the analysis. PHIM perceptions, demographics, and academic variations were used as independent variables to predict diverse PHIM activities using a principal component analysis (PCA) and hierarchical regression analyses (SPSS v.24, IBM Corp, Armonk, NY, USA). RESULTS Majority of the participants were female (956/1408, 67.90%), and the age distribution of this population included an adequate representation of college students of all ages. The most preferred health information resources were family (612/1408, 43.47%), health care professionals (366/1408, 26.00%), friends (27/1408, 1.91%), and the internet (157/1408, 11.15%). Organizational or curatorial activities such as Arranging, Labeling, Categorizing, and Discarding were rated low (average=3.21, average=3.02, average=2.52, and average=2.42, respectively). The PCA results suggested 3 components from perception factors labeled as follows: Assistance (alpha=.85), Awareness (alpha=.716), and Difficulty (alpha=.558). Overall, the Demographics and Academics variables were not significant in predicting dependent variables such as Labeling, Categorizing, Health Education Materials, and Discarding, whereas they were significant for other outcome variables such as Sharing, Collecting, Knowing, Insurance Information, Using, and Owning. CONCLUSIONS College years are a significant time for students to learn decision-making skills for maintaining information, a key aspect of health records, as well as for educators to provide appropriate educational and decision aids in the environment of learning as independent adults. Our study will contribute to better understand knowledge about specific skills and perceptions for college students’ practice of effective PHIM throughout their lives.

“Doing Ethics” in the Context of Sharing Patients' Personal Health Information

2004 ◽  
Vol 23 (3) ◽  
pp. 197-202
Author(s):  
Margaret A. Somerville
Keyword(s):  
Health Care ◽  
Informed Consent ◽  
Health Information ◽  
Health Care Professionals ◽  
Personal Health Information ◽  
Best Interests ◽  
Personal Health ◽  
Competent Person ◽  
Privacy And Confidentiality ◽  
Provision Of Care

ABSTRACTThere are at present two inconsistencies with respect to the sharing of personal health information (PHI) among health care professionals caring for a patient whom the information concerns. First, there is an inconsistency between what is in theory the ethics and law governing the confidentiality and privacy of this information—it may only be disclosed with informed consent—and what is the actual practice of health care professionals—they share it without such consent. Second, there is an inconsistency between what ethics and law demand in theory and what all parties want: They all approve of the current practice. Ethics and law can be brought into line with what is needed to act in the patient's best interests and with what people want, without opening up any serious potential for abuse of privacy and confidentiality, by establishing a safeguarded, provision-of-care exception that allows co-caring health care professionals to share patients' PHI. The requirements for a system establishing such safeguards are proposed. The basic governing presumption is respect for the person and for rights to autonomy, self-determination, privacy, and confidentiality. Therefore, disclosure may only be made with the informed consent of the competent person to whom the information pertains, unless a defence of necessity applies. Where there is doubt about someone's competence, there should likewise be doubt about disclosure without that person's informed consent. Where the person is incompetent, such a disclosure can be made to the patient's substitute decision makers, most often the family, if that is necessary for the care of the patient and in the patient's best interests. To the extent possible, consistent with the best interests of the patient, the wishes of incompetent people should be respected.

scholarly journals Willingness to share personal health information: impact of attitudes, trust and control

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jari Juga ◽  
Jouni Juntunen ◽  
Timo Koivumäki
Keyword(s):  
Health Care ◽  
Information Sharing ◽  
Health Information ◽  
Structural Equation ◽  
Personal Information ◽  
Personal Health Information ◽  
Equation Modeling ◽  
Personal Health ◽  
Content Type ◽  
And Control

Purpose This study aims to explicate the behavioral factors that determine willingness to share personal health data for secondary uses. Design/methodology/approach A theoretical model is developed and tested with structural equation modeling using survey data from Finland. Findings It is shown that attitude toward information sharing is the strongest factor contributing to the willingness to share personal health information (PHI). Trust and control serve as mediating factors between the attitude and willingness to share PHI. Research limitations/implications The measures of the model need further refinement to cover the various aspects of the behavioral concepts. Practical implications The model provides useful insights into the factors that affect the willingness for information sharing in health care and in other areas where personal information is distributed. Social implications Sharing of PHI for secondary purposes can offer social benefits through improvements in health-care performance. Originality/value A broad-scale empirical data gives a unique view of attitudes toward sharing of PHI in one national setting.

scholarly journals The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Sarah Tosoni ◽  
Indu Voruganti ◽  
Katherine Lajkosz ◽  
Flavio Habal ◽  
Patricia Murphy ◽  
...  
Keyword(s):  
Medical Research ◽  
Health Information ◽  
Clinical Medicine ◽  
Comfort Level ◽  
Personal Health Information ◽  
Personal Health ◽  
Younger Patients ◽  
Opt Out ◽  
Study Results ◽  
Circle Of Care

Abstract Background Immense volumes of personal health information (PHI) are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: (a) broad versus specific consent; (b) opt-in versus opt-out approaches; (c) comfort level sharing with different recipients; (d) attitudes towards commercialization; and (e) options to track PHI use and study results. Results 222 participants were included in the analysis; 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients (≤ 49 years) were more uncomfortable than older patients (50 + years; 13% versus 2% uncomfortable, p < 0.05). While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients (63%) preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients (≤ 49 years: 76%). Approximately half of patients were uncomfortable sharing PHI with commercial enterprises (51% uncomfortable, 27% comfortable, 22% neutral). Most patients preferred to track PHI usage (61%), with the highest proportion once again reported by the youngest patients (≤ 49 years: 71%). A majority of patients also wished to be notified regarding study results (70%). Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research.

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