Who Reads Their Doctor’s Notes? Examining the Association between Preconceptions and Accessing Online Clinical Notes

By Jared W. Klein, MD, MPH; Sara L. Jackson, MD, MPH; Natalia V. Oster, MPH; Sue Peacock, BS; Tom Delbanco, MD; Jan Walker, RN, MBA; and Joann G. Elmore, MD, MPH

Patients who use online portals to review their clinicians’ notes may become more actively involved in their healthcare, but the healthcare industry knows little about factors that may facilitate or inhibit patients’ use of this new practice. To look into this topic, researchers from the University of Washington School of Medicine, based in Seattle, WA, and Beth Israel Deaconess Medical Center, Harvard Medical School, based in Boston, MA, compared baseline perceptions about online portals between patients who ultimately did or did not access their doctors’ primary care visit notes, using data collected through the OpenNotes initiative.

Why Conduct the Study

Millions of patients have access to their electronic health records via patient portals, with an increasing number of portals offering access to doctors’ notes.¹ Patient access to doctors’ notes provides numerous potential benefits including better patient-provider communication, enhanced patient satisfaction, the ability to share records with caregivers, and increased opportunity for self-management.^2–4 Federal requirements for the meaningful use of electronic health records also mandate that providers offer access to online portals and incentivize organizations to encourage patient use of these portals.⁵

Facilitating online viewing of doctors’ notes affords a unique opportunity to educate, motivate, and engage patients.⁶ With 926 million office visits in the US every year, there are ample opportunities to engage patients via note reading.⁷ However, a multitude of these opportunities are lost because—depending on the portal availability and implementation strategy—only a small fraction of patients view doctors’ notes.⁸ It is unclear whether a strategy touting the benefits of online note viewing or assuaging concerns would be more effective at encouraging patients to use this new tool. Identifying patient perceptions of facilitators or barriers to accessing their doctors’ notes is important to harnessing the promise of patient engagement. This study evaluates whether baseline differences in perceptions about viewing doctors’ notes among patients with online portal access predict the likelihood of accessing notes.

Study Materials and Methods

OpenNotes is a national initiative that invites patients to review the visit notes written by their doctors, nurses, or other clinicians. The OpenNotes study methods, including survey design and validation, have been described in detail previously.^9,10 In short, patients were given access to their primary care doctors’ visit notes via secure, web-based patient portals for a time period of 12 to 18 months during 2010 and 2011. Patients at three geographically diverse locations (Beth Israel Deaconess Medical Center (BIDMC) in Boston, MA; Geisinger Health Systems (GHS) in Danville, PA; and Harborview Medical Center in Seattle, WA) were invited to participate. At the time of the original study these were the only participating sites in OpenNotes. During the intervention, patients of participating doctors were given access to their primary care visit notes for the first time.

The baseline OpenNotes study survey, completed by patients prior to the start of the intervention, queried patients about demographics (age, gender, race, education, employment, healthcare site), internet behavior (frequency of use, location of access), and validated indicators of current health status (self-reported health, utilization, comorbid conditions, ambulatory care experience, perceived efficacy of interactions with doctors).^11,12 Perceptions of the risks and benefits of viewing notes were captured using a four-point Likert scale of agree, somewhat agree, somewhat disagree, and disagree. Of those patients invited to participate, 9,043 (40 percent) completed the baseline survey.

Two sites, BIDMC and GHS, provided data on comorbid conditions and utilization of outpatient and inpatient services from billing records. All sites provided data indicating whether or not a patient accessed physician notes online.

Patients who completed the baseline survey and saw their primary care doctor at least once during the study intervention period were included so that a minimum of one visit note was available for the patient to read. For the analysis described in this article, survey responses to perception questions were dichotomized into agree/somewhat agree versus disagree/somewhat disagree to account for small numbers in the extreme Likert response categories. Patients who viewed at least one visit note during the intervention period were considered to have accessed their clinical notes.

Differences in patient characteristics and baseline perceptions between those who did or did not access their visit notes during the intervention period were performed using the chi-square statistic for categorical dependent variables and simple logistic regression for continuous variables. Multivariate models evaluated associations between patients’ baseline perceptions and the likelihood of accessing notes. Odds ratio estimates were adjusted for potential demographic, health, and utilization confounders including age, sex, race, education, employment status, self-reported health, study site and a measure of healthcare utilization (number of office visits during the study period). All statistical analyses were conducted using SAS software, version 9.4. All study procedures were approved by the institutional review boards of BIDMC, GHS, and the University of Washington.

Study Results

Of the 6,150 patients who responded to the baseline survey and had at least one visit note available to review during the intervention period, 5,630 (92 percent) accessed at least one doctor note while 520 (8 percent) did not access any notes. Table 1 above presents patient characteristics reported in the baseline survey for those who did and did not access visit notes. A higher proportion of patients who accessed their notes were older, white, female, and retired relative to patients who did not view their notes (all p-values <0.001). Patients with a greater number of office visits were more likely to access notes (p<0.001). High proportions of patients (93-97 percent) with common chronic diseases—including congestive heart failure, asthma, and diabetes—accessed their notes.

Patient-reported ratings of overall satisfaction with their doctor and of doctor-patient communication were not significantly different between patients who accessed or did not access their notes (data not shown). Internet access was not a significant barrier to viewing notes, as all but 71 of 6,041 patients (one percent) reported internet use at least twice a month and 85 percent were daily internet users.

Patients’ baseline perceptions of potential facilitators and barriers to viewing a note were associated with accessing their clinic note during the study period. Specifically, patients more concerned about the potential risks were less likely to ultimately view a note (p=0.005). See Table 2 below for more information.

After adjusting for patient characteristics that remained significant in a multivariate model (age, sex, race), study site, and the number of office visits during the study, patients had lower odds of accessing notes if they felt that the visit notes would be confusing (OR 0.63, 95 percent Confidence Interval (CI) 0.43-0.94, p-value <0.02), anticipated worrying more as a result of reading notes (OR 0.72, 95 percent CI 0.53-0.99, p<0.04), or if they had concerns about privacy (OR 0.77, 95 percent CI 0.61-0.96, p-value 0.02) (see Figure 1 above). Baseline attitudes about potential benefits of viewing notes were not statistically associated with subsequently accessing the notes, though anticipating being better prepared for the visit or understanding their health better after reading notes attained borderline statistical significance.

Why Most, But Not All, Accessed Their Records

While the majority of patients in the study anticipated many potential benefits from accessing their clinic notes, a small—but important—minority of patients did not access their clinic notes, and these patients reported more baseline concerns about privacy issues and fear of being confused or worried by reading their doctors’ notes. While reading their doctors’ clinic notes has the potential to engage them between face-to-face encounters, and thus improving the quality of care and the patient experience, these patients cannot benefit if they do not log in to the online portal and read their medical records. Thus, interventions focused on overcoming these patients’ reservations may prove more productive than simply reiterating known benefits.

Patients’ fear of finding their clinical notes more confusing than helpful might be appropriately founded. Medical terminology, shorthand acronyms, and large amounts of templated or copied and pasted data are frequently used in clinical notes. Therefore, improving the clarity, approachability, and understandability of doctors’ notes is a first step to addressing the worry that the notes will be confusing.¹³Electronic health record vendors could advance technologically feasible improvements by including integrated hyperlinks in visit notes, embedded definitions for medical jargon, and provision of enhanced patient education materials within patient portals. Doctor education on note writing—such as avoiding acronyms, using a clear writing style, avoiding bulky templates, and giving patients the opportunity to review the notes with staff or the doctor—could help alleviate patient concern and confusion.¹⁴

Peer navigators could proactively engage concerned patients, providing reassurance and helping to interpret new or unfamiliar terms. With these innovations, it is possible that viewing notes could ultimately allay patient anxiety about reading their medical records.

Given the numerous sensitive topics addressed by doctors—such as suspected malignancy, genetic screening, mental illness, and addiction—it should come as no surprise that some patients expect to worry more as a result of reading clinical notes. Some evidence suggests doctors underreport sensitive topics when documenting their visits.^15,16 Simple habits such as “writing what you discuss, and discussing what you write” can ground patient expectations and even alleviate anxiety.¹⁷ Plans outlined in clinic notes should be clear and candid to avoid misperceptions that could exacerbate worry. Again, peer navigators with experience reviewing clinical notes could assuage distressed patients. And in the rare instance when a doctor feels that the content of a note could harm a patient (e.g., discussion of alleged intimate partner violence by a partner accessing the record), most electronic systems permit a specific note to be omitted from the patient portal.

Patients concerned about information privacy were also less likely to view their notes. This is a legitimate concern given news headlines about online data breaches^18,19 and can result in increased patient apprehension regarding online portals.^20,21 While acknowledging that the risk of a data breach cannot be completely eliminated, federal law—including HIPAA and the Health Information Technology for Economic and Clinical Health (HITECH) Act—impose robust protections for patient data.²² Patients should protect their health information by safeguarding their own login and password information. Ultimately, patients should be educated that their data is already in electronic form and failing to access this information simply limits its usefulness without affording additional protection.

While this study included patients from three geographically distinct areas with varied online health records, this analysis had several limitations. The patient portal was developed de novo at the safety-net clinic site, requiring in-person enrollment and limiting representation of racial/ethnic minorities in the study population. Participating patients were likely early adopters of online access to doctors’ notes, as suggested by the high rate of viewing notes. While this limits the ability to generalize, it also suggests that even more patients could have concerns about viewing notes online in a broader population. Although study researchers found associations between baseline perceptions and subsequent online note viewing, researchers cannot say whether the perceptions are the reason patients did or did not access their notes. The study’s researchers suspect that many patients allowed informal proxy access (e.g., provided login and password information to family and other caregivers), but did not formally assess the degree to which this was associated with baseline potential concerns.^23,24 Finally, although researchers controlled for multiple potential confounders, residual confounding could influence the results.

More Work Needed to Convince Patients to Access Notes

Patients are gaining unprecedented access to their electronic health records, including doctors’ notes that were previously difficult for patients to obtain. Accessing this information can be valuable for doctor-patient communication and for enhancing patient self-management, although patients’ preconceptions are associated with subsequent use of this technology. Developing strategies to engage patients who have worries about confusion or privacy, such as using peer educators, improving electronic health records, and refining doctors’ documentation, may increase the proportion of patients who take full advantage of benefits offered by viewing doctors’ notes.

Acknowledgements

The authors gratefully acknowledge funding support from The Robert Wood Johnson Foundation, Gordon and Betty Moore Foundation, Peterson Center on Healthcare, and Cambia Health Foundation. The authors also acknowledge the Wang Foundation Fund (Walker and Delbanco), the University of Washington Stern Award (Klein), and the National Cancer Institute K05 CA 104699 (Elmore).

Notes

1. OpenNotes. “Who Is Sharing Notes?” 2016. www.opennotes.org/who-is-sharing-notes/.
2. Ross, Stephen E. and Chen-Tan Lin. “The Effects of Promoting Patient Access to Medical Records: A Review.” Journal of the American Medical Informatics Association 10, no. 2 (March/April 2003): 129-138.
3. Honeyman, Alasdair, Benita Cox, and Brian Fisher. “Potential impacts of patient access to their electronic care records.” Informatics in Primary Care 13, no. 1 (2005): 55-60. https://pdfs.semanticscholar.org/718f/fdcafb46c9f11ba55e2111ac6b8d63d536b6.pdf.
4. Delbanco, Tom et al. “Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead.” Annals of Internal Medicine 157, no. 7 (October 2, 2012): 461-470. http://annals.org/aim/fullarticle/1363511/inviting-patients-read-doctors-notes-quasi-experimental-study-look-ahead.
5. Office of the National Coordinator for Health IT. “Step 5: Achieve Meaningful Use Stage 2: Patient Ability To Electronically View, Download & Transmit (VDT) Health Information.” HealthIT.gov. 2014. www.healthit.gov/providers-professionals/achieve-meaningful-use/core-measures-2/patient-ability-electronically-view-download-transmit-vdt-health-information.
6. Walker, Jan et al. “The Road toward Fully Transparent Medical Records.” New England Journal of Medicine 370, no. 1 (January 2, 2014): 6-8. www.nejm.org/doi/citedby/10.1056/NEJMp1310132#t=article#t=citedby.
7. Centers for Disease Control and Prevention. “National Ambulatory Medical Care Survey: 2012 State and National Summary Tables (Tables 1, 11, 16).” National Center for Health Statistics. 2012. www.cdc.gov/nchs/data/ahcd/namcs_summary/2012_namcs_web_tables.pdf.
8. Mafi, JN et al. “Patients learning to read their doctors’ notes: the importance of reminders.” Journal of the American Medical Informatics Association 23, no. 5 (September 2016): 951-955.
9. Delbanco, Tom et al. “Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead.”
10. Leveille, Suzanne et al. “Evaluating the impact of patients’ online access to doctors’ visit notes: designing and executing the OpenNotes project.” BMC Medical Informatics Decision Making 12, no. 32 (April 13, 2012).
11. Ibid.
12. Maly, Rose C. et al. “Perceived Efficacy in Patient-Physician Interactions (PEPPI): Validation of an Instrument in Older Persons.” Journal of the American Geriatrics Society 46, no. 7 (July 1998): 889-894.
13. Klein, Jared W. et al. “Your Patient is Now Reading Your Note: Opportunities, Problems, and Prospects.” American Journal of Medicine 129, no. 10 (2016): 1,018-1,021. www.amjmed.com/article/S0002-9343(16)30548-4/pdf.
14. Ibid.
15. Hormes, JM, KR Gerhardstein, and PT Griffin. “Under-reporting of alcohol and substance use versus other psychiatric symptoms in individuals living with HIV.” AIDS Care 24, no. 4 (2012): 420-423.
16. Khadjesari, Zarnie et al. “Alcohol consumption screening of newly-registered patients in primary care: a cross-sectional analysis.” British Journal of General Practice 63, no. 615 (2013): e706-e712.
17. Kahn, Michael W. et al. “A Piece of My Mind: Let’s Show Patients Their Mental Health Records.” Journal of the American Medical Association 311, no. 13 (2014): 1,291-1,292.
18. Abelson, Reed and Matthew Goldstein. “Anthem Hacking Points to Security Vulnerability of Health Care Industry.” New York Times. February 5, 2015. www.nytimes.com/2015/02/06/business/experts-suspect-lax-security-left-anthem-vulnerable-to-hackers.html.
19. Terhune, Chad. “UCLA Health System data breach affects 4.5 million patients.” Los Angeles Times. July 17, 2015. www.latimes.com/business/la-fi-ucla-medical-data-20150717-story.html.
20. Simon, Steven R. et al. “Patients’ Attitudes Toward Electronic Health Information Exchange: Qualitative Study.” Journal of Medical Internet Research 11, no. 3 (July-September 2009): e30. www.jmir.org/2009/3/e30/.
21. Whiddett, Richard et al. “Patients’ attitudes towards sharing their health information.” International Journal of Medical Informatics 75, no. 7 (July 2006): 530-541.
22. Office of the National Coordinator for Health IT. “Guide to Privacy and Security of Electronic Health Information.” April 2015. www.healthit.gov/sites/default/files/pdf/privacy/privacy-and-security-guide.pdf.
23. Jackson, Sara L. et al. “Patients Who Share Transparent Visit Notes With Others: Characteristics, Risks, and Benefits.” Journal of Medical Internet Research 16, no. 11 (November 2014): e247. www.jmir.org/2014/11/e247.
24. Wolff, Jennifer L. et al. “Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records.” Journal of the American Medical Informatics Association 24, no. 1 (April 2017): e166-e172.

Jared W. Klein (jaredwk@uw.edu) is assistant professor of medicine at Harborview Medical Center and the University of Washington School of Medicine, based in Seattle, WA. Sara L. Jackson is clinical associate professor of medicine, Natalia V. Oster and Sue Peacock are research consultants, and Joann G. Elmore is professor of medicine at Harborview Medical Center and the University of Washington School of Medicine. Tom Delbanco is professor of medicine, and Jan Walker is assistant professor of medicine at Beth Israel Deaconess Medical Center, Harvard Medical School, based in Boston, MA.