Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study

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Abstract

Background

Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My Health eVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports.

Objective

A qualitative study with purposeful sampling sought to examine patients’ views and experiences with reading their health records, including their clinical notes, online.

Methods

Five focus group sessions were conducted with patients and family members who enrolled in the My Health eVet Pilot at the Portland Veterans Administration Medical Center, Oregon. A total of 30 patients enrolled in the My Health eVet Pilot, and 6 family members who had accessed and viewed their electronic health records participated in the sessions.

Results

Four themes characterized patient experiences with reading the full complement of their health information. Patients felt that seeing their records positively affected communication with providers and the health system, enhanced knowledge of their health and improved self-care, and allowed for greater participation in the quality of their care such as follow-up of abnormal test results or decision-making on when to seek care. While some patients felt that seeing previously undisclosed information, derogatory language, or inconsistencies in their notes caused challenges, they overwhelmingly felt that having more, rather than less, of their health record information provided benefits.

Conclusions

Patients and their delegates had predominantly positive experiences with health record transparency and the open sharing of notes and test results. Viewing their records appears to empower patients and enhance their contributions to care, calling into question common provider concerns about the effect of full record access on patient well-being. While shared records may or may not impact overall clinic workload, it is likely to change providers’ work, necessitating new types of skills to communicate and partner with patients.

Related collections

Most cited references 24

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Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead.

Tom Delbanco, Jan Walker, Sigall K Bell … (2012)

Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors' office notes. To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals. Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors' notes. Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington. 105 PCPs and 13 564 of their patients who had at least 1 completed note available during the intervention period. Portal use and electronic messaging by patients and surveys focusing on participants' perceptions of behaviors, benefits, and negative consequences. 11 797 of 13 564 patients with visit notes available opened at least 1 note (84% at BIDMC, 92% at GHS, and 47% at HMC). Of 5391 patients who opened at least 1 note and completed a postintervention survey, 77% to 87% across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients' questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor's note. One out of 3 patients believed that they should be able to approve the notes' contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop. Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability. Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption. The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.

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Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging.

Andrea Hassol, James Walker, David Kidder … (2015)

Patient access to their electronic health care record (EHR) and Web-based communication between patients and providers can potentially improve the quality of health care, but little is known about patients' attitudes toward this combined electronic access. The objective of our study was to evaluate patients' values and perceptions regarding Web-based communication with their primary care providers in the context of access to their electronic health care record. We conducted an online survey of 4,282 members of the Geisinger Health System who are registered users of an application (MyChart) that allows patients to communicate electronically with their providers and view selected portions of their EHR. To supplement the survey, we also conducted focus groups with 25 patients who were using the system and conducted one-on-one interviews with ten primary care clinicians. We collected and analyzed data on user satisfaction, ease of use, communication preferences, and the completeness and accuracy of the patient EHR. A total of 4,282 registered patient EHR users were invited to participate in the survey; 1,421 users (33%) completed the survey, 60% of them female. The age distribution of users was as follows: 18 to 30 (5%), 31 to 45 (24%), 46 to 64 (54%), 65 and older (16%). Using a continuous scale from 1 to 100, the majority of users indicated that the system was easy to use (mean scores ranged from 78 to 85) and that their medical record information was complete, accurate, and understandable (mean scores ranged from 65 to 85). Only a minority of users was concerned about the confidentiality of their information or about seeing abnormal test results after receiving only an explanatory electronic message from their provider. Patients preferred e-mail communication for some interactions (e.g., requesting prescription renewals, obtaining general medical information), whereas they preferred in-person communication for others (e.g., getting treatment instructions). Telephone or written communication was never their preferred communication channel. In contrast, physicians were more likely to prefer telephone communication and less likely to prefer e-mail communication. Patients' attitudes about the use of Web messaging and online access to their EHR were mostly positive. Patients were satisfied that their medical information was complete and accurate. A minority of patients was mildly concerned about the confidentiality and privacy of their information and about learning of abnormal test results electronically. Clinicians were less positive about using electronic communication than their patients. Patients and clinicians differed substantially regarding their preferred means of communication for different types of interactions.

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Open notes: doctors and patients signing on.

Tom Delbanco, Jan Walker, Jonathan Darer … (2010)

Few patients read their doctors' notes, despite having the legal right to do so. As information technology makes medical records more accessible and society calls for greater transparency, patients' interest in reading their doctors' notes may increase. Inviting patients to review these notes could improve understanding of their health, foster productive communication, stimulate shared decision making, and ultimately lead to better outcomes. Yet, easy access to doctors' notes could have negative consequences, such as confusing or worrying patients and complicating rather than improving patient-doctor communication. To gain evidence about the feasibility, benefits, and harms of providing patients ready access to electronic doctors' notes, a team of physicians and nurses have embarked on a demonstration and evaluation of a project called OpenNotes. The authors describe the intervention and share what they learned from conversations with doctors and patients during the planning stages. The team anticipates that "open notes" will spread and suggests that over time, if drafted collaboratively and signed by both doctors and patients, they might evolve to become contracts for care.

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Author and article information

Contributors

Susan S Woods:

Portland VA Medical CenterHealth Services Research & Development3710 S.W. US Veterans Hospital RoadP3HSRDPortland, OR, 97239United States1 50350442051 5032735367susan.woods@va.gov

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J. Med. Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: Gunther Eysenbach (JMIR Publications Inc., Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: March 2013

Publication date (Electronic): 27 March 2013

Volume: 15

Issue: 3

Electronic Location Identifier: e65

Affiliations

[1] ¹Portland VA Medical Center Health Services Research & Development Portland, ORUnited States

[2] ²Oregon Health & Science University Department of Medical Informatics & Clinical Epidemiology Portland, ORUnited States

[3] ³Schools of Nursing and Medicine Oregon Health & Science University Portland, ORUnited States

[4] ⁴Veterans and Consumers Health Informatics Office Office of Informatics & Analytics Veterans Health Administration Washington, DCUnited States

[5] ⁵Center for Comprehensive Access & Delivery Research and Evaluation Iowa City VA Health Care System Iowa City, IAUnited States

[6] ⁶VA Puget Sound Health Care System Seattle, WAUnited States

Author notes

Corresponding Author: Susan S Woods susan.woods@ 123456va.gov

Article

Publisher ID: v15i3e65

DOI: 10.2196/jmir.2356

PMC ID: 3636169

PubMed ID: 23535584

SO-VID: 2a57ad7a-8707-441f-98b7-892c6de11bcf

Copyright © ©Susan S Woods, Erin Schwartz, Anais Tuepker, Nancy A Press, Kim M Nazi, Carolyn L Turvey, W. Paul Nichol. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 27.03.2013.

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 18 September 2012

Date revision requested : 09 November 2012

Date revision received : 24 January 2013

Date accepted : 06 February 2013

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Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My Health eVet Personal Health Record Pilot: Qualitative Study

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