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Column Title
Ethical Perspectives of the Personal Health Record Patricia R. McCartney, PhD, RNC, FAAN
T
he patient-controlled personal health record is a key component of the Health Information Technology (HIT) agenda, and its use has clear ethical implications for healthcare providers and for patients. Teams of healthcare professionals, healthcare organizations, vendors, and government agencies are currently developing standards and technology for private and secure health data transfer among interoperable networks. Although all parties acknowledge their ethical duty to protect privacy, we don’t know whether patients know or believe that their privacy is protected in a personal health record. Are patients prepared to learn how to control their own personal health information? Also, what are the challenges for pediatric personal health records? There is little available evidence from a patient perspective to answer these questions. The Markle Foundation (2011) conducts surveys that have reported that consumers want specific privacy policies put in place about their health information, including being notified when there has been a breach, an audit trail of who has accessed their personal health information, the opportunity to have informed choices, and the ability to request corrections of when they see mistakes in their personal health record (Markle Foundation, 2011). Less than one-half of respondents felt that individual control of what particular information is shared was essential. The majority of respondents want privacy enforcement mechanisms. The California HealthCare Foundation (2010) survey found the majority of consumer respondents were concerned about the privacy of their personal health information, and were reassured by a May/June 2011
trusted, secure, password-protected site (more than HIPAA standards or the site’s privacy policy). Marquard and Brennan (2009) investigated how patients might really control their personal health information. Patients were given a scenario in which they had to decide which medications (on a list of medicines they were taking) they would tell a doctor about. The choices were a primary care doctor, a neurologist, and an emergency room doctor. The list intentionally included medications that might reveal socially labeled diagnoses such as medications
(American Nurses Association, 2008). Clearly nurses have an obligation not only to protect personal health information, but also to support patients in deciding how their health information is accessed, used, and disclosed. More nursing research is needed about informed choices and how patients decide to share their personal health information. ✜ Patricia R. McCartney is a Senior Clinical Nursing Instructor, Washington Hospital Center Georgetown Scholars Program, Washington, DC, Professor Emerita, State University
Are patients prepared to learn how to control their own personal health information? to treat sexually transmitted infections or other illnesses that could have a social stigma. All patients but one decided to share all medications with all physicians. Patients did not discriminate in sharing, and few mentioned privacy in determining whether to share medication information. Pediatric and adolescent personal health records also pose privacy challenges as parents need access to the record. Bourgeois, Taylor, Emans, Nigrin, and Mandl (2008) outlined a pediatric personal health record framework for differential access based on developmental maturity, minor’s rights, and sensitive nature of the health information. Thus far there are no published reports of patient views of this framework. The American Nurses Association Nursing Informatics Standards of Professional Performance directs nurses to safeguard patients’ protected health information, protect patient autonomy, and assist patients in developing skills of self-advocacy
of New York at Buffalo, and an Editorial Board Member of MCN. She can be reached via e-mail at [email protected] DOI:10.1097/NMC.0b013e31820fcec0 References American Nurses Association (ANA). (2008). Nursing informatics: Scope and standards of practice. Silver Spring, MD: American Nurses Association. Bourgeois, F. C., Taylor, P. L., Emans, S. J., Nigrin, D. J., & Mandl, K. D. (2008). Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. Journal of the American Medical Informatics Association, 15(6), 737-743. doi10.1197/jamia.M2865 California HealthCare Foundation. (2010). Consumers and health information technology: A national survey. Retrieved from www.chcf.org/~/media/Files/PDF/C/ PDF%20ConsumersHealthInfoTechnology NationalSurvey.pdf Markle Foundation. (2011). Connecting for health: Markle consumer survey results 2003-2010. Retrieved from www. connectingforhealth.org/resources/ surveys.html Marquard, J. L., & Brennan, P. F. (2009). Consumers may be more willing to share medication information than policymakers think. Journal of Health Information Management, 23(2), 26-32. MCN
Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
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Column Title
Ethical Perspectives of the Personal Health Record Patricia R. McCartney, PhD, RNC, FAAN
T
he patient-controlled personal health record is a key component of the Health Information Technology (HIT) agenda, and its use has clear ethical implications for healthcare providers and for patients. Teams of healthcare professionals, healthcare organizations, vendors, and government agencies are currently developing standards and technology for private and secure health data transfer among interoperable networks. Although all parties acknowledge their ethical duty to protect privacy, we don’t know whether patients know or believe that their privacy is protected in a personal health record. Are patients prepared to learn how to control their own personal health information? Also, what are the challenges for pediatric personal health records? There is little available evidence from a patient perspective to answer these questions. The Markle Foundation (2011) conducts surveys that have reported that consumers want specific privacy policies put in place about their health information, including being notified when there has been a breach, an audit trail of who has accessed their personal health information, the opportunity to have informed choices, and the ability to request corrections of when they see mistakes in their personal health record (Markle Foundation, 2011). Less than one-half of respondents felt that individual control of what particular information is shared was essential. The majority of respondents want privacy enforcement mechanisms. The California HealthCare Foundation (2010) survey found the majority of consumer respondents were concerned about the privacy of their personal health information, and were reassured by a May/June 2011
trusted, secure, password-protected site (more than HIPAA standards or the site’s privacy policy). Marquard and Brennan (2009) investigated how patients might really control their personal health information. Patients were given a scenario in which they had to decide which medications (on a list of medicines they were taking) they would tell a doctor about. The choices were a primary care doctor, a neurologist, and an emergency room doctor. The list intentionally included medications that might reveal socially labeled diagnoses such as medications
(American Nurses Association, 2008). Clearly nurses have an obligation not only to protect personal health information, but also to support patients in deciding how their health information is accessed, used, and disclosed. More nursing research is needed about informed choices and how patients decide to share their personal health information. ✜ Patricia R. McCartney is a Senior Clinical Nursing Instructor, Washington Hospital Center Georgetown Scholars Program, Washington, DC, Professor Emerita, State University
Are patients prepared to learn how to control their own personal health information? to treat sexually transmitted infections or other illnesses that could have a social stigma. All patients but one decided to share all medications with all physicians. Patients did not discriminate in sharing, and few mentioned privacy in determining whether to share medication information. Pediatric and adolescent personal health records also pose privacy challenges as parents need access to the record. Bourgeois, Taylor, Emans, Nigrin, and Mandl (2008) outlined a pediatric personal health record framework for differential access based on developmental maturity, minor’s rights, and sensitive nature of the health information. Thus far there are no published reports of patient views of this framework. The American Nurses Association Nursing Informatics Standards of Professional Performance directs nurses to safeguard patients’ protected health information, protect patient autonomy, and assist patients in developing skills of self-advocacy
of New York at Buffalo, and an Editorial Board Member of MCN. She can be reached via e-mail at [email protected] DOI:10.1097/NMC.0b013e31820fcec0 References American Nurses Association (ANA). (2008). Nursing informatics: Scope and standards of practice. Silver Spring, MD: American Nurses Association. Bourgeois, F. C., Taylor, P. L., Emans, S. J., Nigrin, D. J., & Mandl, K. D. (2008). Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. Journal of the American Medical Informatics Association, 15(6), 737-743. doi10.1197/jamia.M2865 California HealthCare Foundation. (2010). Consumers and health information technology: A national survey. Retrieved from www.chcf.org/~/media/Files/PDF/C/ PDF%20ConsumersHealthInfoTechnology NationalSurvey.pdf Markle Foundation. (2011). Connecting for health: Markle consumer survey results 2003-2010. Retrieved from www. connectingforhealth.org/resources/ surveys.html Marquard, J. L., & Brennan, P. F. (2009). Consumers may be more willing to share medication information than policymakers think. Journal of Health Information Management, 23(2), 26-32. MCN
Copyright © 2011 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
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