Processes and outcomes of developing a continuity of care document for use as a personal health record by people living with HIV/AIDS in New York City

PURPOSE To describe the processes and outcomes of developing and implementing a Continuity of Care Document (CCD), My Health Profile, as a personal health record for persons living with HIV (PLWH) in an HIV/AIDS Special Needs Plan in New York City. METHODS Multiple qualitative and quantitative data sources were used to describe the processes and outcomes of implementing My Health Profile including focus groups, Audio Computer Assisted Self Interview (ACASI) surveys, administrative databases, chart abstraction, usage logs, and project management records. Qualitative data were thematically analyzed. Quantitative data analytic methods included descriptive and multivariate statistics. Data were triangulated and synthesized using the Reach, Efficacy/Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) Framework. RESULTS Reach - SNP members are predominantly African American or Hispanic/Latino and about one-third are female. A larger proportion of African Americans and smaller proportions of Hispanics/Latinos and Whites were trained to use My Health Profile.Efficacy/Effectiveness - CCDs were produced for 8249 unique members and updated on a monthly basis, 509 members were trained to use My Health Profile. Total number of member logins for 112 active users was 1808 and the longest duration of use was 1008 days. There were no significant differences between users and non-users of My Health Profile in clinical outcomes, perceptions of the quality of medical care, or health service utilization. Adoption -My Health Profile was well-matched to organizational mission, values, and priorities related to coordination of care for a high-risk population of PLWH. Implementation - Pre-implementation focus group participants identified potential barriers to use of My Health Profile including functional and computer literacy, privacy and confidentiality concerns, potential reluctance to use technology, and cognitive challenges. Key strategies for addressing barriers included a dedicated bilingual coach for recruitment, training, and support; basic computer and My Health Profile training; transparent audit trail revealing clinician and case manager access of My Health Profile, time-limited passwords for sharing My Health Profile with others at the point of need, and emergency access mechanism. Maintenance -My Health Profile was integrated into routine operational activities and its sustainability is facilitated by its foundation on standards for Health Information Exchange (HIE). CONCLUSIONS Although potential barriers exist to the use of personal health records (PHRs) such as My Health Profile, PLWH with complex medical needs, low socioeconomic status, and limited computer experience will use such tools when a sufficient level of user support is provided and privacy and confidentiality concerns are addressed.

[1]  J. Tesoriero,et al.  Smoking Among HIV Positive New Yorkers: Prevalence, Frequency, and Opportunities for Cessation , 2010, AIDS and Behavior.

[2]  M. Odlum,et al.  Perceptions of Predisposing, Enabling, and Reinforcing Factors Influencing the Use of a Continuity of Care Document in Special Needs PLWH , 2012, Journal of health care for the poor and underserved.

[3]  Kaija Saranto,et al.  Definition, structure, content, use and impacts of electronic health records: A review of the research literature , 2008, Int. J. Medical Informatics.

[4]  Rainu Kaushal,et al.  Low-income, ethnically diverse consumers' perspective on health information exchange and personal health records , 2011, Informatics for health & social care.

[5]  Gunther Schadow,et al.  Enabling Joint Commission Medication Reconciliation Objectives with the HL7 / ASTM Continuity of Care Document Standard , 2007, AMIA.

[6]  Suzanne Bakken,et al.  Model Formulation: Translating Clinical Informatics Interventions into Routine Clinical Care: How Can the RE-AIM Framework Help? , 2009, J. Am. Medical Informatics Assoc..

[7]  M. Eric Johnson,et al.  Medication administration quality and health information technology: a national study of US hospitals. , 2012, Journal of the American Medical Informatics Association : JAMIA.

[8]  David W. Bates,et al.  White Paper: Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption , 2006, J. Am. Medical Informatics Assoc..

[9]  Valerie M. Sue,et al.  If you build it, will they come? The Kaiser Permanente model of online health care. , 2009, Health affairs.

[10]  Alexander H. Krist,et al.  Designing a patient-centered personal health record to promote preventive care , 2011, BMC Medical Informatics Decis. Mak..

[11]  Carlos Del Rio,et al.  The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. , 2011, Clinical infectious diseases : an official publication of the Infectious Diseases Society of America.

[12]  Paul C Tang,et al.  Your doctor's office or the Internet? Two paths to personal health records. , 2009, The New England journal of medicine.

[13]  Susan E. Buskin,et al.  Population-based metrics for the timing of HIV diagnosis, engagement in HIV care, and virologic suppression , 2012, AIDS.

[14]  Nicholas Genes,et al.  Electronic collaboration: using technology to solve old problems of quality care. , 2010, Academic emergency medicine : official journal of the Society for Academic Emergency Medicine.

[15]  Margaret T May,et al.  Life expectancy of HIV-positive adults: a review. , 2011, Sexual health.

[16]  A. W. Moore.  If you build it. , 2009, The virtual mentor : VM.

[17]  Adam Bosworth,et al.  What it takes: characteristics of the ideal personal health record. , 2009, Health affairs.

[18]  R. Glasgow,et al.  Evaluating the public health impact of health promotion interventions: the RE-AIM framework. , 1999, American journal of public health.

[19]  Terri Pedersen Summey,et al.  If You Build It, Will They Come? , 2004 .

[20]  L. Calza,et al.  Human Immunodeficiency Virus and Hepatitis C Virus Coinfection: Epidemiology, Natural History, Therapeutic Options and Clinical Management , 2004, Infection.

[21]  R. Aungst,et al.  Healthy People 2020 , 2013, American Journal of Kidney Diseases.

[22]  Tresa Undem,et al.  Consumers and Health Information Technology: A National Survey , 2010 .

[23]  Peter Gordon,et al.  HIV patients' willingness to share personal health information electronically. , 2011, Patient education and counseling.

[24]  Gary L. Kreps,et al.  Consumers’ Perceptions About and Use of the Internet for Personal Health Records and Health Information Exchange: Analysis of the 2007 Health Information National Trends Survey , 2010, Journal of medical Internet research.

[25]  Zvisinei Sandi.  DEFINITION , 1961, A Philosopher Looks at Sport.

[26]  Robert L Phillips,et al.  The continuity of care record. , 2004, American family physician.

[27]  Kensaku Kawamoto,et al.  Viewpoint Paper: The Clinical Document Architecture and the Continuity of Care Record: A Critical Analysis , 2006, J. Am. Medical Informatics Assoc..

[28]  Mylvaganam and Borins.  If You Build It , 2005 .

[29]  Andrew N. Phillips,et al.  Projected life expectancy of people with HIV according to timing of diagnosis , 2012, AIDS.

[30]  G. G. Stokes.  "J." , 1890, The New Yale Book of Quotations.

[31]  T. Greenhalgh,et al.  Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace , 2010, BMJ : British Medical Journal.

[32]  Penelope Phipps,et al.  Adoption , 1953, Mental health.

[33]  William B. Lober,et al.  Barriers to the use of a Personal Health Record by an Elderly Population , 2006, AMIA.

[34]  J Hidalgo,et al.  Developing a managed care delivery system in New York State for Medicaid recipients with HIV. , 1999, The American journal of managed care.

[35]  D. Blumenthal,et al.  The "meaningful use" regulation for electronic health records. , 2010, The New England journal of medicine.

[36]  Oliver Tsai,et al.  Promoting Adoption, Usability, and Research for Personal Health Records in Canada: The MyChart Experience , 2011, Healthcare management forum.

[37]  Kenneth D. Mandl,et al.  Helping High-Risk Youth Move through High-Risk Periods: Personally Controlled Health Records for Improving Social and Health Care Transitions , 2011, Journal of diabetes science and technology.

[38]  J Marc Overhage,et al.  All health care is not local: an evaluation of the distribution of Emergency Department care delivered in Indiana. , 2011, AMIA ... Annual Symposium proceedings. AMIA Symposium.

[39]  R. Lazarus,et al.  Viewpoint Paper: Electronic Support for Public Health: Validated Case Finding and Reporting for Notifiable Diseases Using Electronic Medical Data , 2009, J. Am. Medical Informatics Assoc..