Personal health information management among healthy older adults: Varying needs and approaches

OBJECTIVE With age, older adults experience a greater number of chronic diseases and medical visits, and an increased need to manage their health information. Technological advances in consumer health information technologies (HITs) help patients gather, track, and organize their health information within and outside of clinical settings. However, HITs have not focused on the needs of older adults and their caregivers. The goal of the SOARING (Studying Older Adults and Researching their Information Needs and Goals) Project was to understand older adult personal health information management (PHIM) needs and practices to inform the design of HITs that support older adults. MATERIALS AND METHODS Drawing on the Work System Model, we took an ecological approach to investigate PHIM needs and practices of older adults in different residential settings. We conducted in-depth interviews and surveys with adults 60 years of age and older. RESULTS We performed on-site in-person interview sessions with 88 generally healthy older adults in various settings including independent housing, retirement communities, assisted living, and homelessness. Our analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. We identified 3 major themes influencing older adults' practice of PHIM: (1) older adults are most concerned with maintaining health and preventing illness, (2) older adults frequently involve others in PHIM activities, and (3) older adults' approach to PHIM is situational and context-dependent. DISCUSSION Older adults' approaches to PHIM are dynamic and sensitive to changes in health, social networks, personal habits, motivations, and goals. CONCLUSIONS PHIM tools that meet the needs of older adults should accommodate the dynamic nature of aging and variations in individual, organizational, and social contexts.

[1]  G. Casper,et al.  Home is where the head is: a distributed cognition account of personal health information management in the home among those with chronic illness , 2018, Ergonomics.

[2]  Anne Moen,et al.  Health@Home: the work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations. , 2005, Journal of the American Medical Informatics Association : JAMIA.

[3]  George Demiris,et al.  Understanding views on everyday use of personal health information: Insights from community dwelling older adults , 2018, Informatics for health & social care.

[4]  Rupa S. Valdez,et al.  Macroergonomic factors in the patient work system: examining the context of patients with chronic illness , 2017, Ergonomics.

[5]  P. Harris,et al.  Research electronic data capture (REDCap) - A metadata-driven methodology and workflow process for providing translational research informatics support , 2009, J. Biomed. Informatics.

[6]  Wanda Pratt,et al.  Sharing is caring, but not error free: transparency of granular controls for sharing personal health information in social networks. , 2011, AMIA ... Annual Symposium proceedings. AMIA Symposium.

[7]  George Demiris,et al.  Emergency information management needs and practices of older adults: A descriptive study , 2018, Int. J. Medical Informatics.

[8]  Charles Safran,et al.  Information Sharing Preferences of Older Patients and Their Families. , 2015, JAMA internal medicine.

[9]  D. Meltzer,et al.  Use of a Self-Report-Generated Charlson Comorbidity Index for Predicting Mortality , 2005, Medical care.

[10]  George Demiris,et al.  A Closer Look at Health Information Seeking by Older Adults and Involved Family and Friends: Design Considerations for Health Information Technologies , 2018, AMIA.

[11]  Pascale Carayon,et al.  The Balance Theory and the Work System Model … Twenty Years Later , 2009, Int. J. Hum. Comput. Interact..

[12]  Kenneth D. Mandl,et al.  Indivo: a personally controlled health record for health information exchange and communication , 2007, BMC Medical Informatics Decis. Mak..

[13]  George Demiris,et al.  Monitoring for change: the role of family and friends in helping older adults manage personal health information , 2018, J. Am. Medical Informatics Assoc..

[14]  Neil M. Paige,et al.  Electronic Patient Portals: Evidence on Health Outcomes, Satisfaction, Efficiency, and Attitudes , 2013, Annals of Internal Medicine.

[15]  Kelly Caine,et al.  Patients want granular privacy control over health information in electronic medical records , 2013, J. Am. Medical Informatics Assoc..

[16]  S. Iliffe,et al.  Performance of an abbreviated version of the Lubben Social Network Scale among three European community-dwelling older adult populations. , 2006, The Gerontologist.

[17]  C. Anandan,et al.  The Impact of eHealth on the Quality and Safety of Health Care: A Systematic Overview , 2011, PLoS medicine.

[18]  J. Ancker,et al.  The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers , 2015, Journal of medical Internet research.

[19]  Pascale Carayon,et al.  Human factors of complex sociotechnical systems. , 2006, Applied ergonomics.

[20]  Wanda Pratt,et al.  The Invisible Work of Being a Patient and Implications for Health Care: "[the doctor is] my business partner in the most important business in my life, staying alive" , 2008, Conference proceedings. Ethnographic Praxis in Industry Conference.

[21]  Teresa Zayas-Cabán Health information management in the home: a human factors assessment. , 2012, Work.

[22]  Wanda Pratt,et al.  Personal health information management , 2006, CACM.

[23]  Trisha Greenhalgh,et al.  The Day-to-Day Co-Production of Ageing in Place , 2014, Computer Supported Cooperative Work (CSCW).

[24]  Yongmin Kim,et al.  Challenges to Using an Electronic Personal Health Record by a Low-Income Elderly Population , 2009, Journal of medical Internet research.

[25]  Susan S. Woods,et al.  Barriers and drivers of health information technology use for the elderly, chronically ill, and underserved. , 2008, Evidence report/technology assessment.

[26]  D H Gustafson,et al.  Computer support for elderly women with breast cancer. , 1998, JAMA.

[27]  Christopher M Callahan,et al.  Six-Item Screener to Identify Cognitive Impairment Among Potential Subjects for Clinical Research , 2002, Medical care.

[28]  George Demiris,et al.  Use of Patient Portals for Personal Health Information Management: The Older Adult Perspective , 2015, AMIA.

[29]  Soo Borson,et al.  Assessment of Older Adults' Knowledge of and Preferences for Medication Management Tools and Support Systems , 2009, The Annals of pharmacotherapy.

[30]  Patricia Flatley Brennan,et al.  Observing health in everyday living: ODLs and thecare-between-the-care , 2014, Personal and Ubiquitous Computing.

[31]  Joseph Sharit,et al.  Technology Adoption by Older Adults: Findings From the PRISM Trial , 2018, The Gerontologist.

[32]  Jean O. Taylor,et al.  Older Adult Health-Related Support Networks: Implications for the Design of Digital Communication Tools , 2020, Innovation in aging.

[33]  J. Nussbaum Life Span Communication and Quality of Life , 2007 .

[34]  Cameron D. Norman,et al.  eHEALS: The eHealth Literacy Scale , 2006, Journal of medical Internet research.

[35]  Aaron Findley Low Health Literacy and Older Adults: Meanings, Problems, and Recommendations for Social Work , 2015, Social work in health care.

[36]  Joshua B. Barbour,et al.  Avoiding Health Information , 2012, Journal of health communication.

[37]  Carl K. Chang,et al.  Perceptions of technology among older adults. , 2013, Journal of gerontological nursing.

[38]  PetulloBrian,et al.  Effect of Electronic Messaging on Glucose Control and Hospital Admissions Among Patients with Diabetes , 2016 .

[39]  SeonYoon Chung,et al.  Testing Reliability and Validity of the eHealth Literacy Scale (eHEALS) for Older Adults Recruited Online , 2015, Computers, informatics, nursing : CIN.

[40]  Katie A. Siek,et al.  Colorado Care Tablet: The design of an interoperable Personal Health Application to help older adults with multimorbidity manage their medications , 2010, J. Biomed. Informatics.

[41]  P. Carayon,et al.  SEIPS 2.0: a human factors framework for studying and improving the work of healthcare professionals and patients , 2013, Ergonomics.

[42]  Kenneth D Mandl,et al.  Sharing Medical Data for Health Research: The Early Personal Health Record Experience , 2010, Journal of medical Internet research.

[43]  Tiffany C. Veinot,et al.  Transforming consumer health informatics through a patient work framework: connecting patients to context , 2015, J. Am. Medical Informatics Assoc..

[44]  Clair Sullivan,et al.  Going digital: a narrative overview of the clinical and organisational impacts of eHealth technologies in hospital practice. , 2017, Australian health review : a publication of the Australian Hospital Association.

[45]  C. Lyles,et al.  In-Home Technology Training Among Socially Isolated Older Adults: Findings From the Tech Allies Program , 2020, Journal of applied gerontology : the official journal of the Southern Gerontological Society.

[46]  A. Ash,et al.  Measuring patients’ desire for autonomy , 2007, Journal of General Internal Medicine.

[47]  Nicholas J. Belkin,et al.  Information attribute motivators of personal health information management activities , 2015, ASIST.

[48]  S. Musich,et al.  A qualitative study to examine older adults' perceptions of health: Keys to aging successfully , 2017, Geriatric nursing.

[49]  Lawrence A Palinkas,et al.  Building blocks of successful aging: a focus group study of older adults' perceived contributors to successful aging. , 2007, The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry.

[50]  Shwetak N. Patel,et al.  Maslow’s Hierarchy of Human Needs and the Adoption of Health-Related Technologies for Older Adults , 2012 .

[51]  V. Braun,et al.  Using thematic analysis in psychology , 2006 .

[52]  Chandra Y. Osborn,et al.  Secure messaging and diabetes management: experiences and perspectives of patient portal users , 2013, J. Am. Medical Informatics Assoc..

[53]  Wanda Pratt,et al.  Personal Health Information Management: Consumers' Perspectives , 2006, AMIA.