NUR 7110 Module 1 Patient Portal Paper: Open Notes and an Enrollment Gap Example

Who Never Logs In? Widening Portal Use and Opening Visit Notes at an Elizabeth Health System

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M.S. in Nursing, Nursing Informatics, Thomas Edison State University

NUR-7110: Nursing Informatics: Consumer Informatics and Communications Technologies

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Who Never Logs In? Widening Portal Use and Opening Visit Notes at an Elizabeth Health System

The Gap

The organization and figures in this section are invented. A health system based in Elizabeth runs a hospital and eleven primary care and specialty practices serving about 140,000 patients. Its patient portal lets patients see test results, message their clinicians, request refills and schedule visits. Leaders often cite one figure: 61 percent of active patients have a portal account. When the informatics nurse broke that figure down, a different picture appeared. Enrollment was 72 percent among English-speaking patients and 29 percent among the third of patients who prefer Spanish. It was 68 percent among patients under 65 and 38 percent among those 75 and older. Patients on Medicaid enrolled at half the rate of those with commercial insurance.

The system is also considering whether to share visit notes through the portal, which clinicians have debated for two years.

What Open Notes Showed

Delbanco et al. (2012) studied a year in which 105 primary care physicians at three sites in different parts of the United States invited their patients to read visit notes through a portal. Most patients who had notes available opened at least one. Across sites, most patients who opened notes said they now felt more in charge of their own care and understood their health better, and many of those taking medicines reported taking them more as prescribed. Few patients reported being confused, worried or offended by what they read. At the end of the year, nearly all patients wanted access to continue, and no physician chose to stop. Most physicians reported little or no change in visit length or in time spent on questions outside visits, though some changed how they wrote certain topics.

The study answers the main fears clinicians in Elizabeth have raised. It also raises a question the study design did not: the participating sites had high portal use, and patients who never log in cannot read a note.

Who Is Left Out

Goel et al. (2011) examined enrollment and use of a patient portal among adult primary care patients at an academic medical center. Enrollment ran lower for Black and for Hispanic patients than for white patients, a gap that held when the authors adjusted for age, sex, coverage and similar differences. Even after signing up, Black patients logged in less often. The authors argued that portals could widen existing disparities unless health systems made deliberate efforts to enroll and support patients from groups less likely to use them.

Portals and Engagement

Irizarry et al. (2015) reviewed research on patient portals and patient engagement. They described engagement in levels, from having information, to interacting with clinicians, to taking part in one's own care. Portals could support each level, but their effect depended on patient factors such as health literacy, computer access and trust; on design factors such as usability and language; and on clinician factors, especially whether clinicians endorsed the portal and responded to messages. The review found mixed evidence that portals alone improve health outcomes and concluded that engagement grows when portals are designed with patients and supported by clinicians.

Listening to Patients

The informatics nurse and a bilingual community health worker held four small group conversations with patients who did not use the portal, two in Spanish and two with patients over 70. Spanish-speaking patients said the portal was only partly translated, so a result might appear with Spanish labels and an English explanation. Several said they had never been offered an account; they did not know the portal existed. Older patients described forgotten passwords, small text and fear of making a mistake. Many in both groups said they would use it if someone showed them once.

The Plan

Four changes make up the plan. First, front desk staff at every practice offer portal enrollment at check-in and complete it on a tablet with the patient, while medical assistants walk each patient through opening a result and writing to the care team. Second, the system completes the Spanish translation of all patient-facing portal content and adds a language toggle on the login page. Third, patients can designate a family member as a proxy with their own login, which older patients requested. Fourth, after a six-month pilot in four practices, visit notes are released to the portal for adult primary care patients, with clinicians coached to write for a patient audience and allowed to hold a note when sharing could cause harm.

Preparing Clinicians for Open Notes

The four pilot practices held two short sessions with clinicians before notes were released. The first reviewed what the open notes study found, because many clinicians expected a flood of messages that the study did not show. The second practiced writing for a reader who is also the patient: avoiding terms such as "noncompliant" and "denies," explaining abbreviations and writing plans in steps the patient can follow. Clinicians also learned how to hold a note in rare situations, such as when a note documents concern about abuse and sharing it could put the patient at risk. Medical assistants learned how to answer patients who call with questions about something they read, so that clinicians are not the only point of contact.

Measures

The system will report portal enrollment and active use each quarter by language, age group, race and ethnicity and insurance, the share of notes opened, patient-reported understanding after reading notes and messages per clinician.

Limits

The open notes study took place at sites with high portal use and may not predict results among new users. Enrollment at the desk adds work to busy staff. Some patients will not want a portal, and other ways to get results and reach clinicians must stay available.

Conclusion

A single enrollment figure hid large gaps by language, age and insurance. Evidence shows that open notes help patients who read them, that portals can widen disparities and that engagement depends on design and support. The plan widens the door before opening the notes, so that the benefit reaches the patients who were left out.

References

Delbanco, T., Walker, J., Bell, S. K., Darer, J. D., Elmore, J. G., Farag, N., Feldman, H. J., Mejilla, R., Ngo, L., Ralston, J. D., Ross, S. E., Trivedi, N., Vodicka, E., & Leveille, S. G. (2012). Inviting patients to read their doctors' notes: A quasi-experimental study and a look ahead. Annals of Internal Medicine, 157(7), 461-470. https://doi.org/10.7326/0003-4819-157-7-201210020-00002

Goel, M. S., Brown, T. L., Williams, A., Hasnain-Wynia, R., Thompson, J. A., & Baker, D. W. (2011). Disparities in enrollment and use of an electronic patient portal. Journal of General Internal Medicine, 26(10), 1112-1116. https://doi.org/10.1007/s11606-011-1728-3

Irizarry, T., DeVito Dabbs, A., & Curran, C. R. (2015). Patient portals and patient engagement: A state of the science review. Journal of Medical Internet Research, 17(6), e148. https://doi.org/10.2196/jmir.4255