The Importance of Visit Notes on Patient Portals for Engaging Less Educated or Nonwhite Patients: Survey Study

Background OpenNotes, a national initiative to share clinicians’ visit notes with patients, can improve patient engagement, but effects on vulnerable populations are not known very well. Objective Our aim is to examine the importance of visit notes to nonwhite and less educated patients. Methods Patients at an urban academic medical center with an active patient portal account and ≥1 available ambulatory visit note over the prior year were surveyed during June 2016 until September 2016. The survey was designed with patients and families and assessed importance of reading notes (scale 0-10) for (1) understanding health conditions, (2) feeling informed about care, (3) understanding the provider’s thought process, (4) remembering the plan of care, and (5) making decisions about care. We compared the proportion of patients reporting 9-10 (extremely important) for each item stratified by education level, race/ethnicity, and self-reported health. Principal component analysis and correlation measures supported a summary score for the 5 items (Cronbach alpha=.93). We examined factors associated with rating notes as extremely important to engage in care using logistic regression. Results Of 24,722 patients, 6913 (27.96%) completed the survey. The majority (6736/6913, 97.44%) read at least one note. Among note readers, 74.0% (727/982) of patients with ≤high school education, 70.7% (130/184) of black patients, and 69.9% (153/219) of Hispanic/Latino patients reported that notes are extremely important to feel informed about their care. The majority of less educated and nonwhite patients reported notes as extremely important to remember the care plan (62.4%, 613/982 ≤high school education; 62.0%, 114/184 black patients; and 61.6%, 135/219 Hispanic/Latino patients) and to make care decisions (62.3%, 612/982; 59.8%, 110/184; and 58.5%, 128/219, respectively, and P<.003 for all comparisons to more educated and white patients, respectively). Among patients with the poorest self-reported health, 65.9% (499/757) found notes extremely important to be informed and to understand the provider. On multivariable modeling, less educated patients were nearly three times as likely to report notes were extremely important to engage in care compared with the most educated patients (odds ratio [OR] 2.9, 95% CI 2.4-3.3). Nonwhite patients were twice as likely to report the same compared with white patients (OR 2.0, 95% CI 1.5-2.7 [black] and OR 2.2, 95% CI 1.6-2.9 [Hispanic/Latino and Asian], P<.001 for each comparison). Healthier patients, women, older patients, and those who read more notes were more likely to find notes extremely important to engage in care. Conclusions Less educated and nonwhite patients using the portal each assigned higher importance to reading notes for several health behaviors than highly educated and white patients, and may find transparent notes especially valuable for understanding their health and engaging in their care. Facilitating access to notes may improve engagement in health care for some vulnerable populations who have historically been more challenging to reach.

[1]  Kim M. Nazi The Personal Health Record Paradox: Health Care Professionals’ Perspectives and the Information Ecology of Personal Health Record Systems in Organizational and Clinical Settings , 2013, Journal of medical Internet research.

[2]  Robert Nguyen,et al.  The Literacy Divide: Health Literacy and the Use of an Internet-Based Patient Portal in an Integrated Health System—Results from the Diabetes Study of Northern California (DISTANCE) , 2010, Journal of health communication.

[3]  M. Putt,et al.  Prior Experiences of Racial Discrimination and Racial Differences in Health Care System Distrust , 2013, Medical care.

[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]  R. Hasnain-Wynia,et al.  Disparities in Enrollment and Use of an Electronic Patient Portal , 2011, Journal of General Internal Medicine.

[6]  Dean F. Sittig,et al.  The Medicare Electronic Health Record Incentive Program: provider performance on core and menu measures. , 2014, Health services research.

[7]  Kent Nakamoto,et al.  Intentional and Unintentional Medication Non-Adherence in Hypertension: The Role of Health Literacy, Empowerment and Medication Beliefs , 2016, Journal of public health research.

[8]  Joann G. Elmore,et al.  The road toward fully transparent medical records. , 2014, The New England journal of medicine.

[9]  Mark L Unruh,et al.  Disparities in Electronic Health Record Patient Portal Use in Nephrology Clinics. , 2015, Clinical journal of the American Society of Nephrology : CJASN.

[10]  Michelle C Kondo,et al.  Correlates of patient portal enrollment and activation in primary care pediatrics. , 2013, Academic pediatrics.

[11]  R. Kessels,et al.  Patients’ Memory for Medical Information , 2003, Journal of the Royal Society of Medicine.

[12]  Robert Nguyen,et al.  Social disparities in internet patient portal use in diabetes: evidence that the digital divide extends beyond access , 2011, J. Am. Medical Informatics Assoc..

[13]  Timothy P. Hogan,et al.  VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes , 2015, J. Am. Medical Informatics Assoc..

[14]  Taylor Pressler Vydra,et al.  Diffusion and Use of Tethered Personal Health Records in Primary Care. , 2015, Perspectives in health information management.

[15]  N. Gordon,et al.  Older adults’ readiness to engage with eHealth patient education and self-care resources: a cross-sectional survey , 2016, BMC Health Services Research.

[16]  Bradley H. Crotty,et al.  Clinician Encouragement and Online Health Record Usage , 2019, Journal of General Internal Medicine.

[17]  R. Schwei,et al.  Impact of sociodemographic factors and previous interactions with the health care system on institutional trust in three racial/ethnic groups. , 2014, Patient education and counseling.

[18]  M. Chin,et al.  Patient Trust in Physicians and Shared Decision-Making Among African-Americans With Diabetes , 2013, Health communication.

[19]  C. Lyles,et al.  Access, Interest, and Attitudes Toward Electronic Communication for Health Care Among Patients in the Medical Safety Net , 2013, Journal of General Internal Medicine.

[20]  Joann G Elmore,et al.  When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient–doctor relationship , 2016, BMJ Quality & Safety.

[21]  Alan Fossa,et al.  Empowering Informal Caregivers with Health Information: OpenNotes as a Safety Strategy. , 2018, Joint Commission journal on quality and patient safety.

[22]  C. Lyles,et al.  mHealth and Health Information Technology Tools for Diverse Patients with Diabetes , 2017, Journal of diabetes research.

[23]  Kim M. Nazi,et al.  The Association of Patient Factors, Digital Access, and Online Behavior on Sustained Patient Portal Use: A Prospective Cohort of Enrolled Users , 2017, Journal of medical Internet research.

[24]  R. Phillips,et al.  Asian Americans’ reports of their health care experiences , 2004, Journal of General Internal Medicine.

[25]  Katrina Armstrong,et al.  Differences in the Patterns of Health Care System Distrust Between Blacks and Whites , 2008, Journal of General Internal Medicine.

[26]  Jessica S. Ancker,et al.  Use of an Electronic Patient Portal Among Disadvantaged Populations , 2011, Journal of General Internal Medicine.

[27]  Courtney R. Lyles,et al.  Refilling medications through an online patient portal: consistent improvements in adherence across racial/ethnic groups , 2016, J. Am. Medical Informatics Assoc..

[28]  D. Bates,et al.  The digital divide in adoption and use of a personal health record. , 2011, Archives of internal medicine.

[29]  Andrea Berger,et al.  Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records , 2016, J. Am. Medical Informatics Assoc..

[30]  Sara Czaja,et al.  Patient Portals as a Tool for Health Care Engagement: A Mixed-Method Study of Older Adults With Varying Levels of Health Literacy and Prior Patient Portal Use , 2017, Journal of medical Internet research.

[31]  Joann G Elmore,et al.  Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead , 2011, Annals of Internal Medicine.

[32]  Michael Christopher Gibbons,et al.  Use of health information technology among racial and ethnic underserved communities. , 2011, Perspectives in health information management.

[33]  Sara J. Czaja,et al.  The Usability of Electronic Personal Health Record Systems for an Underserved Adult Population , 2015, Hum. Factors.

[34]  Paul C. Tang,et al.  Democratization of Health Care. , 2016, JAMA.

[35]  David W. Bates,et al.  Usability of Commercially Available Mobile Applications for Diverse Patients , 2016, Journal of General Internal Medicine.

[36]  Alan Fossa,et al.  What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information , 2017, Journal of medical Internet research.

[37]  Amy M. Bauer,et al.  Associations Between Antidepressant Adherence and Shared Decision-Making, Patient–Provider Trust, and Communication Among Adults with Diabetes: Diabetes Study of Northern California (DISTANCE) , 2014, Journal of General Internal Medicine.