To Tell or Not to Tell? Professional and Lay Perspectives on the Disclosure of Personal Health Information in Community-Based Dementia Care

2004 ◽  
Vol 23 (3) ◽  
pp. 203-215 ◽  
Author(s):  
C. Shawn Tracy ◽  
Neil Drummond ◽  
Lorraine E. Ferris ◽  
Judith Globerman ◽  
Philip C. Hébert ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Health Information ◽  
Information Exchange ◽  
Early Stage ◽  
Personal Health Information ◽  
Best Interests ◽  
Personal Health ◽  
Care Providers ◽  
Health And Social Care ◽  
Strong Control

ABSTRACTDevelopments in information technology and the ongoing restructuring of health services to increase provision in community settings militate in favour of a streamlining of communications and the exchange of information about patients among health and social care providers. Yet the principles of confidentiality and privacy appear to inhibit this process. In order to explore the practical, ethical, and legal imperatives attendant upon personal health information exchange, we conducted a series of interviews with professional care providers, persons with early-stage dementia, and their family caregivers. The findings indicate some degree of discordance. Professionals reported valuing disclosure both to colleagues and family caregivers on the basis of its being in the patients' best interests. Patients also valued inter-professional exchange, but sought strong control over disclosure to family members. Family caregivers valued being kept informed of the patient's condition, even without the latter's consent. Implications for research and policy are discussed.

scholarly journals Patient portals and personal health information online: perception, access, and use by US adults

2016 ◽  
Vol 24 (e1) ◽  
pp. e173-e177 ◽  
Author(s):  
Sue Peacock ◽  
Ashok Reddy ◽  
Suzanne G Leveille ◽  
Jan Walker ◽  
Thomas H Payne ◽  
...  
Keyword(s):  
Health Care ◽  
Health Information ◽  
Health Care Providers ◽  
Race And Ethnicity ◽  
Personal Health Information ◽  
Personal Health ◽  
Care Providers ◽  
Patient Portals ◽  
The Past ◽  
Patient Race

Background: Access to online patient portals is key to improving care, but we have limited understanding of patient perceptions of online portals and the characteristics of people who use them. Methods: Using a national survey of 3677 respondents, we describe perceptions and utilization of online personal health information (PHI) portals. Results: Most respondents (92%) considered online PHI access important, yet only 34% were offered access to online PHI by a health care provider, and just 28% accessed online PHI in the past year. While there were no differences across race or ethnicity in importance of access, black and Hispanic respondents were significantly less likely to be offered access (P = .006 and <.001, respectively) and less likely to access their online PHI (P = .041 and <.001, respectively) compared to white and non-Hispanic respondents. Conclusion: Health care providers are crucial to the adoption and use of online patient portals and should be encouraged to offer consistent access regardless of patient race and ethnicity.

Commercial Products That Convey Personal Health Information in Emergencies

2011 ◽  
Vol 5 (4) ◽  
pp. 261-265 ◽  
Author(s):  
Vishnu C. Potini ◽  
Dilani N. Weerasuriya ◽  
Douglas W. Lowery-North ◽  
Arthur L. Kellermann
Keyword(s):  
Health Information ◽  
Health Care Providers ◽  
Web Sites ◽  
Personal Health Information ◽  
Primary Sources ◽  
Personal Health ◽  
Care Providers ◽  
Sources Of Information ◽  
Wide Range ◽  
E Mail

ABSTRACTObjective: Describe commercially available products and services designed to convey personal health information in emergencies.Methods: The search engine Google®, supplemented by print ads, was used to identify companies and organizations that offer relevant products and services to the general market. Disease-specific, health system, and health plan-specific offerings were excluded. Vendor web sites were the primary sources of information, supplemented by telephone and e-mail queries to sales representatives. Perfect inter-rater agreement was achieved.Results: Thirty-nine unique vendors were identified. Eight sell engraved jewelry. Three offer an embossed card or pamphlet. Twelve supply USB drives with various features. Eleven support password-protected web sites. Five maintain national call centers. Available media differed markedly with respect to capacity and accessibility. Quoted prices ranged from a one-time expenditure of $3.50 to an annual fee of $200. Associated features and annual fees varied widely.Conclusion: A wide range of products and services exist to help patients convey personal health information. Health care providers should be familiar with their features, so they can access the information in a disaster or emergency.(Disaster Med Public Health Preparedness. 2011;5:261–265)

scholarly journals Differences in Electronic Personal Health Information Tool Use Between Rural and Urban Cancer Patients in the United States: Secondary Data Analysis

JMIR Cancer ◽  
10.2196/17352 ◽  
2020 ◽  
Vol 6 (2) ◽  
pp. e17352
Author(s):  
Alexandra Greenberg-Worisek ◽  
Liaa Ferede ◽  
Joyce Balls-Berry ◽  
Ian Marigi ◽  
Emily Valentin Mendez ◽  
...  
Keyword(s):  
Health Care ◽  
Information Technology ◽  
Cancer Patients ◽  
Health Information Technology ◽  
Health Information ◽  
Health Care Providers ◽  
Personal Health Information ◽  
Personal Health ◽  
Care Providers ◽  
Rural And Urban

Background Studies have previously shown that rural cancer patients are diagnosed at later stages of disease. This delay is felt throughout treatment and follow-up, reflected in the fact that rural patients often have poorer clinical outcomes compared with their urban counterparts. Objective Few studies have explored whether there is a difference in cancer patients’ current use of health information technology tools by residential location. Methods Data from 7 cycles of the Health Information National Trends Survey (HINTS, 2003-2017) were merged and analyzed to examine whether differences exist in managing electronic personal health information (ePHI) and emailing health care providers among rural and urban cancer patients. Geographic location was categorized using Rural-Urban Continuum Codes (RUCCs). Bivariate analyses and multivariable logistic regression were used to determine whether associations existed between rural/urban residency and use of health information technology among cancer patients. Results Of the 3031 cancer patients/survivors who responded across the 7 cycles of HINTS, 797 (26.9%) resided in rural areas. No difference was found between rural and urban cancer patients in having managed ePHI in the past 12 months (OR 0.78, 95% CI 0.43-1.40). Rural cancer patients were significantly less likely to email health care providers than their urban counterparts (OR 0.52, 95% CI 0.32-0.84). Conclusions The digital divide between rural and urban cancer residents does not extend to general ePHI management; however, electronic communication with providers is significantly lower among rural cancer patients than urban cancer patients. Further research is needed to determine whether such disparities extend to other health information technology tools that might benefit rural cancer patients as well as other chronic conditions.

scholarly journals Preparing Nursing Homes for the Future of Health Information Exchange

2015 ◽  
Vol 06 (02) ◽  
pp. 248-266 ◽  
Author(s):  
M. Rantz ◽  
C. Galambos ◽  
A. Vogelsmeier ◽  
M. Flesner ◽  
L. Popejoy ◽  
...  
Keyword(s):  
Nursing Homes ◽  
Health Information ◽  
Information Exchange ◽  
Health Information Exchange ◽  
Use Cases ◽  
Personal Health Information ◽  
Personal Health ◽  
Structured Interviews ◽  
Resident Care ◽  
External Stakeholders

SummaryObjective: Our purpose was to describe how we prepared 16 nursing homes (NHs) for health information exchange (HIE) implementation.Background: NH HIE connecting internal and external stakeholders are in their infancy. U.S. initiatives are demonstrating HIE use to increase access and securely exchange personal health information to improve patient outcomes.Method: To achieve our objectives we conducted readiness assessments, performed 32 hours of clinical observation and developed 6 use cases, and conducted semi-structured interviews with 230 participants during 68 site visits to validate use cases and explore HIE.Results: All 16 NHs had technology available to support resident care. Resident care technologies were integrated much more with internal than external stakeholders. A wide range of technologies were accessible only during administrative office hours. Six non-emergent use cases most commonly communicated by NH staff were: 1) scheduling appointments, 2) laboratory specimen drawing, 3) pharmacy orders and reconciliation, 4) social work discharge planning, 5) admissions and pre-admissions, and 6) pharmacy-medication reconciliation. Emerging themes from semi-structured interviews about use cases included: availability of information technology in clinical settings, accessibility of HIE at the point of care, and policies/procedures for sending/receiving secure personal health information.Conclusion: We learned that every facility needed additional technological and human resources to build an HIE network. Also, use cases help clinical staff apply theoretical problems of HIE implementation and helps them think through the implications of using HIE to communicate about clinical care.Citation: Alexander GL, Rantz M, Galambos C, Vogelsmeier A, Flesner M, Popejoy L, Mueller J, Shumate S, Elvin M. Preparing nursing homes for the future of health information exchange. Appl Clin Inf 2015; 6: 248–266http://dx.doi.org/10.4338/ACI-2014-12-RA-0113

“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 Differences in Electronic Personal Health Information Tool Use Between Rural and Urban Cancer Patients in the United States: Secondary Data Analysis (Preprint)

2019 ◽  
Author(s):  
Alexandra Greenberg-Worisek ◽  
Liaa Ferede ◽  
Joyce Balls-Berry ◽  
Ian Marigi ◽  
Emily Valentin Mendez ◽  
...  
Keyword(s):  
Health Care ◽  
Information Technology ◽  
Cancer Patients ◽  
Health Information Technology ◽  
Health Information ◽  
Health Care Providers ◽  
Personal Health Information ◽  
Personal Health ◽  
Care Providers ◽  
Rural And Urban

BACKGROUND Studies have previously shown that rural cancer patients are diagnosed at later stages of disease. This delay is felt throughout treatment and follow-up, reflected in the fact that rural patients often have poorer clinical outcomes compared with their urban counterparts. OBJECTIVE Few studies have explored whether there is a difference in cancer patients’ current use of health information technology tools by residential location. METHODS Data from 7 cycles of the Health Information National Trends Survey (HINTS, 2003-2017) were merged and analyzed to examine whether differences exist in managing electronic personal health information (ePHI) and emailing health care providers among rural and urban cancer patients. Geographic location was categorized using Rural-Urban Continuum Codes (RUCCs). Bivariate analyses and multivariable logistic regression were used to determine whether associations existed between rural/urban residency and use of health information technology among cancer patients. RESULTS Of the 3031 cancer patients/survivors who responded across the 7 cycles of HINTS, 797 (26.9%) resided in rural areas. No difference was found between rural and urban cancer patients in having managed ePHI in the past 12 months (OR 0.78, 95% CI 0.43-1.40). Rural cancer patients were significantly less likely to email health care providers than their urban counterparts (OR 0.52, 95% CI 0.32-0.84). CONCLUSIONS The digital divide between rural and urban cancer residents does not extend to general ePHI management; however, electronic communication with providers is significantly lower among rural cancer patients than urban cancer patients. Further research is needed to determine whether such disparities extend to other health information technology tools that might benefit rural cancer patients as well as other chronic conditions.

scholarly journals The Potential of Blockchain Technology for Health Information Exchange: Experimental Study From Patients’ Perspectives (Preprint)

2019 ◽  
Author(s):  
Pouyan Esmaeilzadeh ◽  
Tala Mirzaei
Keyword(s):  
Health Care ◽  
Health Information ◽  
Information Exchange ◽  
Health Care Organizations ◽  
Health Information Exchange ◽  
Health Care Industry ◽  
Personal Health Information ◽  
Personal Health ◽  
Web Based ◽  
Blockchain Technology

BACKGROUND Nowadays, a number of mechanisms and tools are being used by health care organizations and physicians to electronically exchange the personal health information of patients. The main objectives of different methods of health information exchange (HIE) are to reduce health care costs, minimize medical errors, and improve the coordination of interorganizational information exchange across health care entities. The main challenges associated with the common HIE systems are privacy concerns, security risks, low visibility of system transparency, and lack of patient control. Blockchain technology is likely to disrupt the current information exchange models utilized in the health care industry. OBJECTIVE Little is known about patients’ perceptions and attitudes toward the implementation of blockchain-enabled HIE networks, and it is still not clear if patients (as one of the main HIE stakeholders) are likely to opt in to the applications of this technology in HIE initiatives. Thus, this study aimed at exploring the core value of blockchain technology in the health care industry from health care consumers’ views. METHODS To recognize the potential applications of blockchain technology in health care practices, we designed 16 information exchange scenarios for controlled Web-based experiments. Overall, 2013 respondents participated in 16 Web-based experiments. Each experiment described an information exchange condition characterized by 4 exchange mechanisms (ie, direct, lookup, patient-centered, and blockchain), 2 types of health information (ie, sensitive vs nonsensitive), and 2 types of privacy policy (weak vs strong). RESULTS The findings show that there are significant differences in patients’ perceptions of various exchange mechanisms with regard to patient privacy concern, trust in competency and integrity, opt-in intention, and willingness to share information. Interestingly, participants hold a favorable attitude toward the implementation of blockchain-based exchange mechanisms for privacy protection, coordination, and information exchange purposes. This study proposed the potentials and limitations of a blockchain-based attempt in the HIE context. CONCLUSIONS The results of this research should be of interest to both academics and practitioners. The findings propose potential limitations of a blockchain-based HIE that should be addressed by health care organizations to exchange personal health information in a secure and private manner. This study can contribute to the research in the blockchain area and enrich the literature on the use of blockchain in HIE efforts. Practitioners can also identify how to leverage the benefit of blockchain to promote HIE initiatives nationwide.

scholarly journals Monitoring for change: the role of family and friends in helping older adults manage personal health information

2018 ◽  
Vol 25 (8) ◽  
pp. 989-999 ◽  
Author(s):  
Jean O Taylor ◽  
Andrea L Hartzler ◽  
Katie P Osterhage ◽  
George Demiris ◽  
Anne M Turner
Keyword(s):  
Older Adults ◽  
Health Information ◽  
Information Exchange ◽  
Health Information Exchange ◽  
Medication Management ◽  
Well Being ◽  
Physical Distance ◽  
Personal Health Information ◽  
Personal Health ◽  
Health Maintenance

Abstract Objective Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs. Methods We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interview transcripts for themes about FF information work, barriers, and support needs. Results FF play a supportive role in OA health maintenance, medical encounters, decision making, and daily activities. Monitoring, the ongoing process of seeking information related to the OA status, emerged as a key activity comprised of 3 phases: detection, interpretation, and action. Barriers to monitoring included OA choices and constraints, FF constraints, and difficulty with technological tools, resources, health information exchange between providers, social network dynamics, and physical distance. Conclusions FF frequently monitor for change in OA well-being, seeking up-to-date information to facilitate support of OA PHIM. Health information technology tools designed for FF can support all phases of monitoring by providing: (1) timely and granular levels of access to OA health information as the OA ages; (2) tailored health education for FF that is based on OA clinical data; and (3) networking platforms that integrate delegation, volunteering, and relevant resources, along with tools to facilitate support of OA appointment calendars and medication management. Such tools could reduce the burden of PHIM for OA and their loved ones.

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